The two shots I got this time are so different then last time. I know they are in different spots, and there were two of them verses one shot. But it hurts. It hurt when they put it in, even though I was on an IV for pain, it hurt all day the first day and all day the second day and it is the third day and it is still sore. There is pain down my legs, and sharp pain in my neck once in a while. The one shot went into my tail bone so that could be why it is sore, but last time I felt like a new person the day after the injections. Wow what a difference. They did say it could take two to three days before it stopped hurting, but yesterday I did some research on the web and came upon a great web site about these injections and how dangerous they can be. Also about weight gain they can cause, Yes even from the simple injections. It makes me so disgusted. It is like everything you take, or do to get better causes so many side effects or there are so many risks, you wonder if you should just not take anything and take your own risks. My Imuran can cause serious side effects such as cancer, my carbamizpine can cause a serious and rare blood disease, all the drugs can cause kidney and/or liver failure, so it makes one wonder. I know I need the thyroid meds and blood pressure meds, but maybe I should throw the rest down the sink?
I talk so big, as I sit here right now and my legs ache so bad, my thighs and butt are so weak, and sore, that I am thinking of taking the vicadin I hardly ever take my full amount I am allowed, I think I am so brave because I suffer through the pain instead of taking what is prescribed for me. So I know I talk in circles. One paragraph I want to throw them all away the next (give me drugs) lol. But really not funny.
Tried to go to a dollar store today to get prizes for a baby shower (my first granddaughter) yeah, but I had everything I could do to make it to the store and walk around it and back out to the car. I dragged myself. Pain and weakness, I am beginning to think either things are progressing faster then they thought they would, or there is yet another autoimmune problem. Lets hope to God not. I am a very up person, and feel lucky most of the time, but the dragging my body, and the feeling there is a five hundred pound weight dragging behind me is sometimes too much.
Thursday, January 31, 2013
Tuesday, January 29, 2013
Major pain in the back and legs
I went in today for a steroid shot in my lower spine, and in the tail bone. I had this done first part of Dec and it lasted until Dec 25, and it was great to have no pain in my back, but I did over do for the rest of my problems, because I could. My legs would get so weak, because I would keep going. But the day of Christmas, I could feel it, start. I thought too much work, but when I asked today why it only lasted for three weeks they said this was normal. Lot of people do not get any relief so it was a good sign to get the relief I did. What they try to do, I understood by what they said was that they try a few shots and relocate them to cover the nerves that are affected to try to ease the pain. It will not take it away but they hope to make it a little better. The pain doctor did say to keep swimming after this week of rest after the shot, (they do not want you soaking in warm or hot water, or hot tubs) they want the steroid to sit where they put it, I have to ice it for a few days so it does. The hot water or heat will make the steroid treatment disperse to other areas. So hoping it does help again as the pain level in my lower back and legs have been unbearable for a week now. Just dragging myself to do anything. Now what to blame it on I do not know. My arms also hurt bad even to touch them. So it could be the small fiber neuropahty too. Could be the myosits also. Who knows right? Will be anxious to get back to swimming next week as it does make me feel like I am doing something.
My eyes and brain have felt funny too, blurry, kind of out of it, hope that goes away soon. That is from the Hashimoto's Encephalopathy hard to concentrate on things. Again one does not know when to call or go into a doctor. Just let it go and see where it goes is my thing lately. Because I am so sick of doctors and appointments. Really sometimes with all the research I have done I feel like I may know more about some of the rare autoimmune diseases then some of my doctors. I do not mean to be rude about this, but really I do. The problem is I do not know how to express myself or use the big words they use in the text I read. But it is up there in my brain, it is easier for me to write it then to speak it. In fact last night I was staying with a friend overnight in a hotel close to the clinic I was to get the treatment for today, and had to apologize for my speech. I had to close my eyes several times to think of the word I wanted to say. Again it is the Encephalitis/Encephalopathy. Good thing it was a good friend and she understands somewhat.
Well time to go and ice my back again, what a pain in the butt, (no bun intended) lol.
My eyes and brain have felt funny too, blurry, kind of out of it, hope that goes away soon. That is from the Hashimoto's Encephalopathy hard to concentrate on things. Again one does not know when to call or go into a doctor. Just let it go and see where it goes is my thing lately. Because I am so sick of doctors and appointments. Really sometimes with all the research I have done I feel like I may know more about some of the rare autoimmune diseases then some of my doctors. I do not mean to be rude about this, but really I do. The problem is I do not know how to express myself or use the big words they use in the text I read. But it is up there in my brain, it is easier for me to write it then to speak it. In fact last night I was staying with a friend overnight in a hotel close to the clinic I was to get the treatment for today, and had to apologize for my speech. I had to close my eyes several times to think of the word I wanted to say. Again it is the Encephalitis/Encephalopathy. Good thing it was a good friend and she understands somewhat.
Well time to go and ice my back again, what a pain in the butt, (no bun intended) lol.
Wednesday, January 23, 2013
Medication List
I do not know if this well help anyone or not, but in the slight chance that my list helps someone or some doctor try something new for someone who is ill, and it helps I will be happy. So here goes.
As of January 23, 2013
AmLODLpine 10mg once a day for blood pressure and for my Raynauds disease it is a Calcium channel blocker.
Aspirin 81 mg one a day
Fluticasone nasal spray for allergies
Furosemide (40)mg one a day
Levothyroxine 100mg one a day for Hashimoto's (Hypothryoid)
Estrace Cream is for dryness of vagina
XYZAL Levocetirizine 5 mg one a day for allergies
Azathioprine 50mg tabsl take 3 per day (IMURAN) this is the dangerous one the doctors were arguing about dosage or disc.
Aspirin 81 mg one a day
Lorazapan 0.5mg 1-2 3xaday for anxiety
Lexapro 20Mg once a day for depression
Carbamazipine 100 mg tabs 4 a day 2 morn 2 night, this is an anti seizures med that acts for my neuropathy too.
Hydrocodone APAP 5-325 TABLQ 3 times a day for pain, I try not to take three, I try to take just two, but there are just some days I have to.
Omeprazole DR. 20Mg Caps twice a day for Acid Reflux
Pravastatin sodium 10 MG tabs take one a day for cholesterol.
Vit D 1.25 MG 50,000 one every other week., This is adjusted regularly because of my vit d level fluctuates so much. One time it was down to 13 so low.
Klor-Con M 20 1 a day potassium
Lisnopril 5 MG 1 a day this was just added in Dec it is a blood pressure meds, often given to people with Scleroderma, it is an ace inhibitor
Drugs I have been on for these diseases but no longer take:
Hydroxyuchloroquine, this is an antimalarial drug that I was first placed on because it has the least of the side affects. This is when I was dx with Scleroderma.
Nuvigil this was for concentration problems, but could not take it because it made my heart race.
Pentoxifylline ER which is called Trental I was on this for the Raynaud's when it was so bad.
They also tried a nitroglycerin cream to put on my hands, but that did not work. (Raynauds).
Asacol EC 400 MG six a day, this was for the colitis problem when it was so bad, I also was told to take over the counter pepto bismal tabs six times a day along with this. It did help, did not take it away but when I had the steroid IV infusions thank goodness I got relief.
I know there are many more I can not remember, so many cortisone creams I could not even imagine to tell you all presc and then there was a anti itch pill I was on that helped with the itching when it was so bad but of course loss them all in our fire.
I hope this can help someone out.
As of January 23, 2013
AmLODLpine 10mg once a day for blood pressure and for my Raynauds disease it is a Calcium channel blocker.
Aspirin 81 mg one a day
Fluticasone nasal spray for allergies
Furosemide (40)mg one a day
Levothyroxine 100mg one a day for Hashimoto's (Hypothryoid)
Estrace Cream is for dryness of vagina
XYZAL Levocetirizine 5 mg one a day for allergies
Azathioprine 50mg tabsl take 3 per day (IMURAN) this is the dangerous one the doctors were arguing about dosage or disc.
Aspirin 81 mg one a day
Lorazapan 0.5mg 1-2 3xaday for anxiety
Lexapro 20Mg once a day for depression
Carbamazipine 100 mg tabs 4 a day 2 morn 2 night, this is an anti seizures med that acts for my neuropathy too.
Hydrocodone APAP 5-325 TABLQ 3 times a day for pain, I try not to take three, I try to take just two, but there are just some days I have to.
Omeprazole DR. 20Mg Caps twice a day for Acid Reflux
Pravastatin sodium 10 MG tabs take one a day for cholesterol.
Vit D 1.25 MG 50,000 one every other week., This is adjusted regularly because of my vit d level fluctuates so much. One time it was down to 13 so low.
Klor-Con M 20 1 a day potassium
Lisnopril 5 MG 1 a day this was just added in Dec it is a blood pressure meds, often given to people with Scleroderma, it is an ace inhibitor
Drugs I have been on for these diseases but no longer take:
Hydroxyuchloroquine, this is an antimalarial drug that I was first placed on because it has the least of the side affects. This is when I was dx with Scleroderma.
Nuvigil this was for concentration problems, but could not take it because it made my heart race.
Pentoxifylline ER which is called Trental I was on this for the Raynaud's when it was so bad.
They also tried a nitroglycerin cream to put on my hands, but that did not work. (Raynauds).
Asacol EC 400 MG six a day, this was for the colitis problem when it was so bad, I also was told to take over the counter pepto bismal tabs six times a day along with this. It did help, did not take it away but when I had the steroid IV infusions thank goodness I got relief.
I know there are many more I can not remember, so many cortisone creams I could not even imagine to tell you all presc and then there was a anti itch pill I was on that helped with the itching when it was so bad but of course loss them all in our fire.
I hope this can help someone out.
Stress and Autoimmune diseases
Research has shown that stress can bring on autoimmune diseases, you are predisposed but it can bring it out if you are under a lot of stress I always thought this it seemed to make sense, but when I went to a scleroderma specialist in Chicago, she asked me if I had an elderly parent and I said yes and then she asked if I was a sole caregiver and I said yes, and she said, that studies have found that baby boomers (such as I am) they have found develop a lot of autoimmune diseases and problems because of the stress brought on by care giving a loved one. As our parents and elderly are living longer, so is the care giving living longer, then add in to the fact that the brain was not designed to live that long, it develops things such as my mom had dementia. I know for myself I was under such extreme stress at the time everything started to fall apart for me for my health. I believe this is true at least for me.
But there is a problem, They tell you to limit stress, stay away from it, it can make your diseases worst, or put you into a flare. But how do you do this? Just living in this day and age is stress. Add on just one Chronic, illness and you have stress, now add several rare chronic diseases, and sure I will limit my stress. Then you have the financial burden you have with chronic illnesses. Unless you have the best insurance in the world, it is a burden. I had to quit my job, (I had worked for over 25 years) no retirement benefits, or insurance as my husband has paid over 1350.00 per month for insurance for us and until the last few years we never used it, but we are using it now. So add in loss of wages, and meeting your 3,000 per year deductible every year by Feb 1, it is a stressful situation for all. As far as disability or SSD that is also very stressful to try to apply for. So stress is in our life's we just have to learn to handle it the best way we can. I have never been a believer in drugs, never even took an aspirin, but things are different now. With the stress that the illnesses cause I have agreed with the docs to help me out with medication. I am not ashamed to admit. I would have been a few years ago, but not now. In the past year and a half, we have lost our home, that we loved, my mom three weeks later, that I loved with all my heart and soul. We are still fighting with insurance to get our house rebuilt, and my husband is losing his eyesight to Macular Degeneration. So yes give me drugs. lol.
Monday, January 21, 2013
Go Ask Your Mother, Go Ask Your Father Geeeee
So, to call or not to call, write a letter, or not write a letter, gee. My doctor came back today and read my letter, I got a phone call right away from her nurse telling me the doctor (neurologist), read my letter and wants to know who authorized the lowering of my Imuran, when, and why. Well I am thinking, to myself "hey I am not the doctor here" but I knew what she meant. My neurologist is like my quarterback in my health care and I am so grateful for this and to her, she will call my rheumatolgist and discuss my case and what to do. This is great, but when I went to my rheumy in Oct he wanted to take me off the Imuran because of all the bad side affects of the drug,( which I explained in an earlier post). He told me to talk to my neurologist at my appt in Nov. for which I did. She did not feel I should because of the Hashimoto's Encephalopathy that I have so she said she would call my rheumy and discuss it with him. She did they called me and said to stay on it. On ward to Dec, when I needed a renewal on the prescription. I got the presc from the rheumy and it was lowered to three a day instead of 4. Well I did think to myself it would have been nice to know they were lowering it, but just went ahead with it. Now because of my letter to the neuro she did not know it was lowered and was upset. The nurse asked if I would call the rheumy office and find out if it was a mistake or for real. (Go ask you mother, go ask your father). So I did and they did, and I did again call the neuros office and told them and they called me back again and said stay on the three. If I keep having symptoms to call. Oh by the way the doctor agreed I should not have taken the other prescription the doctor on call prescribed when she was gone. But I am thinking so what about the sweet potatoes. GEE.
So went my day. Sorry for spelling tonight, for some reason the spell check does not want to help me tonight. It must be talking to my two doctors and can not decide whether or not it should or should not help me out. GEE.
So went my day. Sorry for spelling tonight, for some reason the spell check does not want to help me tonight. It must be talking to my two doctors and can not decide whether or not it should or should not help me out. GEE.
Hashimoto's Encepalopahty Fellow Suffers
Hello, late again, I have to start these earlier. LOL
I would like to inform any fellow H.E. patients, that I am putting together a book on H.E patient stories along with another. We hope to have at least 50 stories to include. We are hoping by doing this we can help someone who is newly diagnoised to have some where to go to see what others have gone through and how they are doing now. I know myself when I was first diagnoised, I did not have a clue what it was. When I researched it on the internet I could not find much at all. What I did find was articles that made it sound as if as soon as you had your steriods, you would be all better and able to work and resume a normal life again, but I found out the hard way that this is not always true, in fact it is not the norm. So having patient stories that others can read I think would really be helpful. We are incouraging family members and friends to also write their stories for the book, as they have a story to tell also.
If you would be interested to include your story just leave me a comment and I will tell you what to do from there. We would be so appreciative.
I would like to inform any fellow H.E. patients, that I am putting together a book on H.E patient stories along with another. We hope to have at least 50 stories to include. We are hoping by doing this we can help someone who is newly diagnoised to have some where to go to see what others have gone through and how they are doing now. I know myself when I was first diagnoised, I did not have a clue what it was. When I researched it on the internet I could not find much at all. What I did find was articles that made it sound as if as soon as you had your steriods, you would be all better and able to work and resume a normal life again, but I found out the hard way that this is not always true, in fact it is not the norm. So having patient stories that others can read I think would really be helpful. We are incouraging family members and friends to also write their stories for the book, as they have a story to tell also.
If you would be interested to include your story just leave me a comment and I will tell you what to do from there. We would be so appreciative.
Sunday, January 20, 2013
Myositis
Myositis is very rare disease which is considered chronic inflammation of muscle tissue which is accompanied by muscle weakness.
Myositis is considered to be a connective tissues disease also, for which is an autoimmune disorder that your white blood cells attack blood vessels, joints, bones, organs (connective tissue) and also attacks normal muscle.
The three main types of myositis are polymyositis, dermatomyositis, and inclusion body myositis, there are others also but these are the main ones.
Some of the myositis is considered to be idiopathic, which means no known cause but they are thought to be autoimmune disorders.
Slow and progressive muscle weakness starts in the proximal muscles which means the muscles closes to the body, the inflammation causes damage to the muscles that causes the weakness and can also cause problem,s with the arteries and blood vessels that are in the muscles that are affected.
Fatigue is a big part with myositis. Such as I described in an another post, the weakness and fatigue after walking or standing, tripping, falling. Sometimes this can affect your swallowing or breathing. Some get pain as I do also from the weakness and fatigue.
This can also cause problems with speaking, getting up from chairs, climbing stairs, lifting items, shortness of breath etc.
This disease can slowly progress this is what my doctors told me that I have the progressive type.
The treatment for this is the immune suppressants such as I take, preds. Exercise is good with good sense.
Diagnoses is very difficult for this disease. I myself had to have a muscle biopsy to have the final diagnoses. I also had an EMG and the doctor put it together with the symptoms.
Myositis is considered to be a connective tissues disease also, for which is an autoimmune disorder that your white blood cells attack blood vessels, joints, bones, organs (connective tissue) and also attacks normal muscle.
The three main types of myositis are polymyositis, dermatomyositis, and inclusion body myositis, there are others also but these are the main ones.
Some of the myositis is considered to be idiopathic, which means no known cause but they are thought to be autoimmune disorders.
Slow and progressive muscle weakness starts in the proximal muscles which means the muscles closes to the body, the inflammation causes damage to the muscles that causes the weakness and can also cause problem,s with the arteries and blood vessels that are in the muscles that are affected.
Fatigue is a big part with myositis. Such as I described in an another post, the weakness and fatigue after walking or standing, tripping, falling. Sometimes this can affect your swallowing or breathing. Some get pain as I do also from the weakness and fatigue.
This can also cause problems with speaking, getting up from chairs, climbing stairs, lifting items, shortness of breath etc.
This disease can slowly progress this is what my doctors told me that I have the progressive type.
The treatment for this is the immune suppressants such as I take, preds. Exercise is good with good sense.
Diagnoses is very difficult for this disease. I myself had to have a muscle biopsy to have the final diagnoses. I also had an EMG and the doctor put it together with the symptoms.
What Is A Connective Tisssue Disease?
The term connective tissue disease really means that it is a various group of medical diseases. The collection of connective tissue is actually the target of these diseases. The connective tissue in our bodies is the structure in our bodies that holds it all together. It is like a framework, that holds everything together for which is made up of molecules of collagen and elastin. When you have a connective tissue disease the collagen or elastin can become inflamed. There is no research that shows any causes for one to get a connective tissues disease.
You can see with this frame work of connective tissue how autoimmune disease involvement can affect your whole body.
Mine has features of the scleroderma for which makes everything even more complicated.
You can see with this frame work of connective tissue how autoimmune disease involvement can affect your whole body.
Mine has features of the scleroderma for which makes everything even more complicated.
A Little More Explanations On Ilnesses and Meds
I started to think the other day that I did not go into very much explanations on the medications I have been taken or have I gone into very much of an explanation on the illnesses I will try to do better.
First I would like to explain my Imuran I am on for the UCTD with the features of the scleroderma, the Hashimoto's Encephalitis, the Myositis, and also the autoimmune colitis that I have.
Imuran is an immune suppressant. With autoimmune diseases your immune system is on over drive attacking your own body. With the immune suppressants such as I take which is the Imuran, it helps to suppress my immune system but by doing so it also makes me more at risk illness. It lowers white blood cell count. Mine has been very low for over two years. Just having a lowered white blood cell count makes you more susceptible to catching colds, flues, all illnesses. I was told when I started on this drug that I should avoid crowds, I should stay out of weddings, receptions, closed buildings, anythings that closes the germs in. I was also told this drug is dangerous it can cause certain kinds of cancers. Certain kinds of blood disorders. This drug is classified under a cancer drug. I am well aware of the risks of this drug, but also well aware of the what ifs that could happen if I did not take it. When I start to get a cold or cough I am suppose to go into a doctor right away because of the risk.
First I would like to explain my Imuran I am on for the UCTD with the features of the scleroderma, the Hashimoto's Encephalitis, the Myositis, and also the autoimmune colitis that I have.
Imuran is an immune suppressant. With autoimmune diseases your immune system is on over drive attacking your own body. With the immune suppressants such as I take which is the Imuran, it helps to suppress my immune system but by doing so it also makes me more at risk illness. It lowers white blood cell count. Mine has been very low for over two years. Just having a lowered white blood cell count makes you more susceptible to catching colds, flues, all illnesses. I was told when I started on this drug that I should avoid crowds, I should stay out of weddings, receptions, closed buildings, anythings that closes the germs in. I was also told this drug is dangerous it can cause certain kinds of cancers. Certain kinds of blood disorders. This drug is classified under a cancer drug. I am well aware of the risks of this drug, but also well aware of the what ifs that could happen if I did not take it. When I start to get a cold or cough I am suppose to go into a doctor right away because of the risk.
Wednesday, January 16, 2013
Sending letter to Doctor
I have decided to send a letter to my Neuro for her to have when she comes home from her vacation and gets back to work. I feel it is easier for me to explain in writing then it is for me to try to relay what is going on through her nurses. There is just too much going on. Hope fully I will get a call back within a week of her return although I know she will be so busy catching up.
I left off explaining what treatment options you can have with Hashimoto's Encephalopathy. I myself right now need a treatment and I know it. Today I felt like crap, slept almost all day and I hate that. I feel like I am wasting a whole day of my life. But could hardly keep my eyes open plus my head hurts bad, sinus, who knows. My head will hurt all over and it does not have to be sinus, so it could be due to the H.E. but regardless of what it is, I could not even go swimming today which really bummed me out. I just started for exercise and love it. But it would not have been good today.
My diagnoses of H.E. came after a string of other autoimmune diseases. Right before the diagnoses of the H.E. I was dx with Myositis for which is another very rare autoimmune disease. There are several types that follow under the heading of myositis, but mine is said to be a autoimmune response with no label. I had an elevated CPK test plus an abnormal muscle biopsy. This disease causes muscle weakness of your body. Your legs are so weak as mine was I could not even step up over a curb. To climb stairs was almost imposable. To hold my arms up to wash my own hair was such a chore that I would skip it many days because I just could not hold up my arms long enough to finnish. To think that I just let this happen and did not realize there was something very wrong. How one convinces one self that they are ok, or we just learn to live with limitations and go on day in and day out suffering with out even knowing it. I do not think it is suffering after a while, it is just living.
Myositis also causes extreme fatigue along with other symptoms. So now I had the H.E. and the myositis that causes fatigue and weakness both so it is so hard to tell which one is causing which.
During this time I was also dx with peripheral neuropathy and small fiber neuropathy, inflammatory myopathy. I will just describe the neuropathys in a general way and put both together. My neuropathy problems affect everything in my body. From my scalp to my feet, from sharp electrical type of shock pain to a numbing or burning sensation. It can cause itching, also no temperature control in your body, it can cause incomplete emptying of your bladder. It also can be blamed for diarrhea, drying of skin and hair. It also is to blame for balance issues, eye issues and twitching just to name a few. Lets say I have most of all the symptoms that they list under these neuropathys that come and go at different times. I take Carbamizapine which is an anti-seizure medicine to help control the symptoms. This was diagnosed by and EMG and Nerve conduction test, along with a nerve biopsy.
The myopathy was dx by EMG and a muscle biopsy and my cpk levels. Myopathys are inflammation of your muscles. Which also causes weakness and in my case is progressive I was told.
Well enough for tonight. More later.
I left off explaining what treatment options you can have with Hashimoto's Encephalopathy. I myself right now need a treatment and I know it. Today I felt like crap, slept almost all day and I hate that. I feel like I am wasting a whole day of my life. But could hardly keep my eyes open plus my head hurts bad, sinus, who knows. My head will hurt all over and it does not have to be sinus, so it could be due to the H.E. but regardless of what it is, I could not even go swimming today which really bummed me out. I just started for exercise and love it. But it would not have been good today.
My diagnoses of H.E. came after a string of other autoimmune diseases. Right before the diagnoses of the H.E. I was dx with Myositis for which is another very rare autoimmune disease. There are several types that follow under the heading of myositis, but mine is said to be a autoimmune response with no label. I had an elevated CPK test plus an abnormal muscle biopsy. This disease causes muscle weakness of your body. Your legs are so weak as mine was I could not even step up over a curb. To climb stairs was almost imposable. To hold my arms up to wash my own hair was such a chore that I would skip it many days because I just could not hold up my arms long enough to finnish. To think that I just let this happen and did not realize there was something very wrong. How one convinces one self that they are ok, or we just learn to live with limitations and go on day in and day out suffering with out even knowing it. I do not think it is suffering after a while, it is just living.
Myositis also causes extreme fatigue along with other symptoms. So now I had the H.E. and the myositis that causes fatigue and weakness both so it is so hard to tell which one is causing which.
During this time I was also dx with peripheral neuropathy and small fiber neuropathy, inflammatory myopathy. I will just describe the neuropathys in a general way and put both together. My neuropathy problems affect everything in my body. From my scalp to my feet, from sharp electrical type of shock pain to a numbing or burning sensation. It can cause itching, also no temperature control in your body, it can cause incomplete emptying of your bladder. It also can be blamed for diarrhea, drying of skin and hair. It also is to blame for balance issues, eye issues and twitching just to name a few. Lets say I have most of all the symptoms that they list under these neuropathys that come and go at different times. I take Carbamizapine which is an anti-seizure medicine to help control the symptoms. This was diagnosed by and EMG and Nerve conduction test, along with a nerve biopsy.
The myopathy was dx by EMG and a muscle biopsy and my cpk levels. Myopathys are inflammation of your muscles. Which also causes weakness and in my case is progressive I was told.
Well enough for tonight. More later.
Saturday, January 12, 2013
Balance and speech issues
As my balance and speech issues got worst and my word finding and memory continued to worsen and to scare the hell out of me I kept thinking it also was stress related as my poor mom was suffering from Dementia and I was the sole caregiver and her disease was getting worst. I was getting calls at work from her constantly and from her social workers, and her doctors, and I would have to go pick her up in the middle of the night for she was scared and hallucinating. I felt so sorry for her, and so scared for her, but she would not move in with us, I would drop her off at her apartment in the morning and pick her up when she called at night scared. So you can easily see why I and the primary doctor kept saying stress.
But my symptoms were getting so weird. Some of the things I did or said were not me. I got depression, and anger issues, I flew off the handle easier then normal. I said weird things to the customers at work when I was still working. My head felt like it would explode at times, or numb in the base of my skull. My eyes would be blurry like your glasses are dirty, I would drive and look up at the street lights and get weird feeling, I would have to look away the lights bothered me so much it scared me. In fact the neurologist told me I could no longer drive any distance just very close to home which made it difficult. My hearing got worst. I would be afraid of falling in the shower when I closed my eyes. I had such weird symptoms.
Dr. Santilan wanted me to go to Mayo, but my insurance would not cover it, so as I did some research I found that the University of Chicago a teaching Hospital had an excellent scleroderma clinic and a great neurology area. So Dr. Santillan sent me on my way.
I was a little disappointed with my Chicago's visit, I felt they did not even exam me, just looked at my existing charts took more blood that confirmed my ANA but did show up an interesting result on the lab report.
My Thyroid was out of wack for which they upped my thyroid meds almost double. But more importantly my thyroid blood work showed up a very high Thyroid Peroxidase AutoAbs of over 1200 where normal is below 30. That is all that was needed to have Dr. Santillan dx me with what was causing all the rest of the problems and that was Hashimoto's Encephalitis. If you research this rare disease it will describe it as a relapsing encephalopathy occurring in association with Hashimoto's disease (not always true) with high titers of antithyroid antibodies. Clinically the condition presents with altered consciousness, confusion, focal or generalized seizures, myoclonus and episodes of stroke like deterioration. But there are so many other symptoms that can and do occur before you are diagnosed that is why the doctors have such a hard time to diagnose a patient.
There are several treatment options but the first one the doctors usually try with great success high pulse IV Steroid treatment with Solu-Medrol (methylprednisolone sodium succinate). This treatment generally is given between 3 to 7 days for which I had it for 5. There is a tapering dose that is sent home with the patient which commonly starts with 60mg per day and tapers slowly down over many months. Some are then started on Immune suppressants which some of which are Imuran, Cellcept, Methotrexate and if these do not seem to do the trick the doctor may try IVIG which is an Intravenous Immunoglobulin treatment, and also there is Plasmapheresis also called Plasma exchange or Plasma Transfer this is where they take the patients blood and filter it through machine that separates the plasma from actual blood cells It maybe replaced by salilne, albumin, or donor plasma. the reconstituted solution is then returned to the patent.
But my symptoms were getting so weird. Some of the things I did or said were not me. I got depression, and anger issues, I flew off the handle easier then normal. I said weird things to the customers at work when I was still working. My head felt like it would explode at times, or numb in the base of my skull. My eyes would be blurry like your glasses are dirty, I would drive and look up at the street lights and get weird feeling, I would have to look away the lights bothered me so much it scared me. In fact the neurologist told me I could no longer drive any distance just very close to home which made it difficult. My hearing got worst. I would be afraid of falling in the shower when I closed my eyes. I had such weird symptoms.
Dr. Santilan wanted me to go to Mayo, but my insurance would not cover it, so as I did some research I found that the University of Chicago a teaching Hospital had an excellent scleroderma clinic and a great neurology area. So Dr. Santillan sent me on my way.
I was a little disappointed with my Chicago's visit, I felt they did not even exam me, just looked at my existing charts took more blood that confirmed my ANA but did show up an interesting result on the lab report.
My Thyroid was out of wack for which they upped my thyroid meds almost double. But more importantly my thyroid blood work showed up a very high Thyroid Peroxidase AutoAbs of over 1200 where normal is below 30. That is all that was needed to have Dr. Santillan dx me with what was causing all the rest of the problems and that was Hashimoto's Encephalitis. If you research this rare disease it will describe it as a relapsing encephalopathy occurring in association with Hashimoto's disease (not always true) with high titers of antithyroid antibodies. Clinically the condition presents with altered consciousness, confusion, focal or generalized seizures, myoclonus and episodes of stroke like deterioration. But there are so many other symptoms that can and do occur before you are diagnosed that is why the doctors have such a hard time to diagnose a patient.
There are several treatment options but the first one the doctors usually try with great success high pulse IV Steroid treatment with Solu-Medrol (methylprednisolone sodium succinate). This treatment generally is given between 3 to 7 days for which I had it for 5. There is a tapering dose that is sent home with the patient which commonly starts with 60mg per day and tapers slowly down over many months. Some are then started on Immune suppressants which some of which are Imuran, Cellcept, Methotrexate and if these do not seem to do the trick the doctor may try IVIG which is an Intravenous Immunoglobulin treatment, and also there is Plasmapheresis also called Plasma exchange or Plasma Transfer this is where they take the patients blood and filter it through machine that separates the plasma from actual blood cells It maybe replaced by salilne, albumin, or donor plasma. the reconstituted solution is then returned to the patent.
I am not taking the new Medicine!!!!!!!!
Well picked up the new med that was prescribed for me this morning, but decided not to take it until my normal Neurologist comes back from vacation. I do not believe this is the right thing for me to take. Yes I am not a doctor, or even have any medical training per say, but my gut tells me NO. The drug is called Risperidone .025 MG and is a anti psychotic drug. Well for just seeing sweet potatoes on my bathroom door, lol I do not feel warrants this type of drug. Here is one has to be pro active with their health care. This doctor that prescribed it, more than likely (probably 100%) certain has never treated a Hashimoto's Encephalitis patient before. Since it is so rare, and maybe about 200 cases in the world. So what are the chances. The side affects of this drug, is muscle weakness (I already have myosistis, myopathy) Can affect the brain neurons (I have this already too) believe me I do not need to loose more than I have. Can cause weight gain which according to this is almost certain (well obviously the doctor has never seen me) he would know I do not need that too. There is a list of others for which I can not afford to get as a side effect. I know all meds have them,. but I do not want to risk this one. I looked up treatments for H.E. and did not see any,mention of this drug as a treatment. So I will wait to take it until I talk to my friend Dr. Santillian.
Friday, January 11, 2013
Con from To call or not to call
January 12, 2013
Well I ended up calling my neurologists office today on the advice of one of you fellow HE patients who told me that my symptoms could be another form of a flare of Hashimoto's Encephalitis. Soooooo I decided to take her at her word and advice and called. My doctor is on vacation of course until the end of the month. I asked if there were any openings after that and they said not until March for which I already have an appointment then. So I would have just dropped it, thinking oh well can not be that bad, but the nurse said I should tell her what is going on and she would tell the doctor on duty, for Dr. Santillan, so she did and called me back with in an hour. The doctor prescribed for me an anti hallucinate for me. and I am to call them back next thurs. Well, I do not like this either, I do not have the hallucinations that often and only just started, so hate to take yet another pill. GEE can not remember the name but when my husband picks them up I will add it to this. Here I was complaining because I was afraid of another round of IV infusions out patients but I think this might be worst, can not wait to check out what side affects these cause.
Well to con. where I left off (by accident yesterday). My doctor had dx me with Scleroderma. which is a serious chronic connective tissue disease that can cause death but also can disfigure you. It hardens your skin, your body, your lungs, heart, kidneys, hands, feet, ect. Everything. So he started me on Hydroxychloroquine which is an anti malaria drug, and I started to feel better so with in a couple of months he changed my dx to UCTD with features of Scleroderma. Which I stayed on for about six months but my muscles felt worst, I was getting more fatigue and started to have swallowing issues for which I had two EGDs within six months two dilate my esophagus because I was choking on food. Because my muscle were getting worst my rheumy took me off the Hydroxycloroquine (side affects can be muscle problems) and he started me on Imuran at 150MG a day. But still I was having problems.
I decided to go back to my primary doctor, and tell her about the muscle and the nerve problems I was having in my legs and hands, I knew there was something going on and I just felt nobody was listening to me. (Stress was blamed on everything). The primary doctor checked my reflexes and then asked me if I wanted to start anti depression meds, or see a neurologist, I thought about this and said I want both. Best decision I have made in a long time. I did not want to start on lexapro because of the known weight gain, but I did and it helped me calm down, and the neurologist is the one doctor I say saved my life.
Her name is Dr. Santillan and she is a neurologist she was someone who listened to me, and laughed with me, she was honest with me and helped through an unknown period of my illness.
The first appointment with Dr. Santillan she examined me, read my records, as I told her how my memory was getting bad, my speech was getting bad, my balance was off. I would have episodes that seemed like out of body experiences and end up in the ER. Were of course they said it was stress. But she did not. I would be at work and try to say mirror and kept saying window, or try to talk and say a word and could not get it out of my mouth, it was like there was not enough spit, or my tongue would not work well enough to form the words. ( I was in sales and my job was to talk to people) I was so embarrassed and frustrated. The fatigue was bad, I would walk into walls, could not go through a door way without knocking into the door frame no matter how large the door frame was, I would walk down steps and it looked like I was drunk. I would tip. I had no balance at all. Could not concentrate or sometimes could understand what others were saying, it sounded to me like bla,bla, bla. It was bad and getting worst. Dr. Santillan right away ordered a MRA, MRI, EEG, spinal tap, EMG, and a nerve conduction test, then came the biopsy's of my nerves and my muscle. She dx me first with inflammatory myopathy, which she said was progressive, also told me I had puerperal neuropathy, and small fiber neuropathy. This was the beginning. She started me on Carbamazepine, 4 a day of 100mg each and told me I needed to quit my job or it would be dangerous for me to work. She said with everything you have wrong with you, you would get disability right away. So July of 2011 I did quit my job and applied. I have to say when I walked out of her office I was in a state of shock. I had girlfriends waiting for me that I looked at them and said she told me I am very, very ill, and need to quit working. I could not even think. I knew I was sick but to be told you are very, very ill scares the hell out of you. Trust me on this. The carbamazepine did help with the neuropathy and the seizure type of out of body experience's I had, not gone but better. But I still was getting worst with my word find, and speech and balance issues.
Well I ended up calling my neurologists office today on the advice of one of you fellow HE patients who told me that my symptoms could be another form of a flare of Hashimoto's Encephalitis. Soooooo I decided to take her at her word and advice and called. My doctor is on vacation of course until the end of the month. I asked if there were any openings after that and they said not until March for which I already have an appointment then. So I would have just dropped it, thinking oh well can not be that bad, but the nurse said I should tell her what is going on and she would tell the doctor on duty, for Dr. Santillan, so she did and called me back with in an hour. The doctor prescribed for me an anti hallucinate for me. and I am to call them back next thurs. Well, I do not like this either, I do not have the hallucinations that often and only just started, so hate to take yet another pill. GEE can not remember the name but when my husband picks them up I will add it to this. Here I was complaining because I was afraid of another round of IV infusions out patients but I think this might be worst, can not wait to check out what side affects these cause.
Well to con. where I left off (by accident yesterday). My doctor had dx me with Scleroderma. which is a serious chronic connective tissue disease that can cause death but also can disfigure you. It hardens your skin, your body, your lungs, heart, kidneys, hands, feet, ect. Everything. So he started me on Hydroxychloroquine which is an anti malaria drug, and I started to feel better so with in a couple of months he changed my dx to UCTD with features of Scleroderma. Which I stayed on for about six months but my muscles felt worst, I was getting more fatigue and started to have swallowing issues for which I had two EGDs within six months two dilate my esophagus because I was choking on food. Because my muscle were getting worst my rheumy took me off the Hydroxycloroquine (side affects can be muscle problems) and he started me on Imuran at 150MG a day. But still I was having problems.
I decided to go back to my primary doctor, and tell her about the muscle and the nerve problems I was having in my legs and hands, I knew there was something going on and I just felt nobody was listening to me. (Stress was blamed on everything). The primary doctor checked my reflexes and then asked me if I wanted to start anti depression meds, or see a neurologist, I thought about this and said I want both. Best decision I have made in a long time. I did not want to start on lexapro because of the known weight gain, but I did and it helped me calm down, and the neurologist is the one doctor I say saved my life.
Her name is Dr. Santillan and she is a neurologist she was someone who listened to me, and laughed with me, she was honest with me and helped through an unknown period of my illness.
The first appointment with Dr. Santillan she examined me, read my records, as I told her how my memory was getting bad, my speech was getting bad, my balance was off. I would have episodes that seemed like out of body experiences and end up in the ER. Were of course they said it was stress. But she did not. I would be at work and try to say mirror and kept saying window, or try to talk and say a word and could not get it out of my mouth, it was like there was not enough spit, or my tongue would not work well enough to form the words. ( I was in sales and my job was to talk to people) I was so embarrassed and frustrated. The fatigue was bad, I would walk into walls, could not go through a door way without knocking into the door frame no matter how large the door frame was, I would walk down steps and it looked like I was drunk. I would tip. I had no balance at all. Could not concentrate or sometimes could understand what others were saying, it sounded to me like bla,bla, bla. It was bad and getting worst. Dr. Santillan right away ordered a MRA, MRI, EEG, spinal tap, EMG, and a nerve conduction test, then came the biopsy's of my nerves and my muscle. She dx me first with inflammatory myopathy, which she said was progressive, also told me I had puerperal neuropathy, and small fiber neuropathy. This was the beginning. She started me on Carbamazepine, 4 a day of 100mg each and told me I needed to quit my job or it would be dangerous for me to work. She said with everything you have wrong with you, you would get disability right away. So July of 2011 I did quit my job and applied. I have to say when I walked out of her office I was in a state of shock. I had girlfriends waiting for me that I looked at them and said she told me I am very, very ill, and need to quit working. I could not even think. I knew I was sick but to be told you are very, very ill scares the hell out of you. Trust me on this. The carbamazepine did help with the neuropathy and the seizure type of out of body experience's I had, not gone but better. But I still was getting worst with my word find, and speech and balance issues.
Thursday, January 10, 2013
To call or not to call
January 11. 2013
That is the question I am posing to myself. Been having some very weird Hashimoto's Encephalopathy issues lately. Such as the other day, while watching a cooking show where they were whipping up sweet potatoes and I needed to use the rest room as I pushed to door open to go in (it is white) I saw this large smear of sweet potatoes, as I sat in there thinking, where did that come, we have not had any, it must be something else, so when I got out of the bathroom, and looked at it again to wipe it off, it was gone, in fact there never had been anything on the door. My brain must have transposed the sweet potatoes I was watching on to the door. This sort of unnerved me that my brain was doing this. Along with the tipping issues (balance) I am not sure I should call the neurologists office or not. Hate to go in as I am afraid of another round of IV infusions of steroid's. So I will see what I will do.
When you have autoimmune diseases you never know which one is acting up. They all seem to overlap each other. Symptoms can be so much the same, in fact they can cause the same symptoms sometimes. So how does one know which is doing what. In fact how do the doctors know which one is doing what.
Well I said I would start with my autoimmune diseases and discuss what I have and what I have gone through hopefully to help someone else.
About seven or so years ago, I started having sore fingers, they ached, my thumbs ached the worst, I thought it was from moving racks around for over 20 years (as I was in retail clothing business) so we were always moving things around the stores, I am short so I used my thumbs to help carry the racks.
but soon I started to get tired, I mean dam tired. No matter what I did or did not do I was tired, and my thumbs still hurted. It got so bad that one day before Christmas I was sitting in my truck in front of our local Walmart and I looked at the store and thought I just can not go in I am to tired to walk from my truck to the store. Now this was not like me I am like the energizing bunny go, go, go. I could out work someone 1/3 of my age. I thought it must be stress related so pushed through and went in and forced myself around the store and went home. Decided then and there to see a doctor after the holidays for which I did.
The doctor found I had severe hypothyroidism along with the beginning of high blood pressure. She prescribed thyroid meds and I thought ok, now I am going to feel better right away. Well not to be so, my fingers now hurted worst, I kept gaining weight some from the fact that I was so fatigued and other from the hypothyroidism. I just kept going though, because I am never sick. But it got so bad I could not use my fingers especially my thumbs to hold things, pull up my pants, put my bra on, had to buy a front hooker one because of this. Still thought stress and the hypothyroidism. Started a new job, felt even worst, my hands now looked as bad as they felt, swollen, red, blotchy looking, just ugly, and I was working in a jewelry store and had to use my hands all the time to show people rings and such and was so embarrassed of them. I had people comment on them daily. I tired every cream, every soaking concoction on the market to no avail. I tried to hide them when people were around, I could not use them to unlock our cases with the jewelry in at work because of the pain and swelling.
I would drop the jewelry because I could not hold onto anything tight. Right about now I started with another autoammune symptom.
I developed colitis, I could not go anywhere or do anything without the embarrassing symptoms of colitis. I would be working with customers and have to make an excuse to go to the back to use the bathroom, and with colitis you never know how long it will take and if you will have time to make it to the bathroom without an accident. I had a colonoscopy done to see what was the matter and was dx with a rare form of colitis called Lymphocytic which was also an autoimmune disease.
Around the same time I started to have sore joints, and muscles, it started to feel like I was carrying around a 500 pound weight with me. I dragged. I was tired. I was sore. I would have like hot spots, first it would be my ankles, that hurt like heck, then it would be my elbows, etc. But the dragging feeling was the worst. Then it started I could not go up an incline, even one step such as a low curbing was too much for me. My arms could not stay up long enough to wash my hair. Still my doctor blamed it on stress. (As there was a lot of stress in my life at the time). At work I dragged myself through the day, barely. when I got home, I had a hard time to get out of my truck and to go up the steps I had to drag my body up the steps by pulling on the railing and going one by one.
I had from October at this time to March with hives from my ankles to my butt, then went up to my shoulders and bib type area on my chest. It itched so bad I thought I would dye. I again tryed everything, nothing worked. I went to a doctor who gave me steroids but they only helped temporally when they were done the itch and rash came back. I also had such skin sensitivity to tags, material, I had to change to all cotton, cut all tags out of my clothes and stop wearing nylons to work as I could not stand the feeling anymore. I had to stop wearing jewelry also. It stopped by its self in March of the following year.
Now I started to have a sensitivity to the sun, I could not be outside at all without getting red, and feverish feeling. My legs would swell, face, etc. Decided to go see a dermatologist for the hands and the sun thing, he did dx me with photosensitive. But thought I might have lupus, so started with every blood work you can imagine, as this went on for a few months, and my arm weakness and leg weakness got worst, I would also brake out with a red hot flush that would be inside both legs from ankles to knees and would last for a week or so and the same with my forearms, they would be hot to touch and fiery red. My ANA came back positive and speckled pattern so the Dermatologist thought for sure it was lupus in fact told me I had it but did not want to put it down because I would never get Insurance again with that on my record.
Well then started another autoimmune problem. Raynauds disease my hands turned blue, I mean a true blue color, it would happen when I was cold, or stressed. Then they would be white, red, but it was awful I was having a hell of a time with this, then my feet started and my nose. Once at work I looked into a mirror and my nose was blue, nice look for a fancy jewelry store. I started on a calcium channel blocker to help control my Raynauds disease. This did seem to help they also put me on pentoxifylline which is a drug they put you on for this disease. About this time I asked for a referral to a rhuematolgist.
Went to the new rhuematolgist who looked at all my blood work ups and my hands and gave me a dx of scleroderma another rare autoimmune disease.
That is the question I am posing to myself. Been having some very weird Hashimoto's Encephalopathy issues lately. Such as the other day, while watching a cooking show where they were whipping up sweet potatoes and I needed to use the rest room as I pushed to door open to go in (it is white) I saw this large smear of sweet potatoes, as I sat in there thinking, where did that come, we have not had any, it must be something else, so when I got out of the bathroom, and looked at it again to wipe it off, it was gone, in fact there never had been anything on the door. My brain must have transposed the sweet potatoes I was watching on to the door. This sort of unnerved me that my brain was doing this. Along with the tipping issues (balance) I am not sure I should call the neurologists office or not. Hate to go in as I am afraid of another round of IV infusions of steroid's. So I will see what I will do.
When you have autoimmune diseases you never know which one is acting up. They all seem to overlap each other. Symptoms can be so much the same, in fact they can cause the same symptoms sometimes. So how does one know which is doing what. In fact how do the doctors know which one is doing what.
Well I said I would start with my autoimmune diseases and discuss what I have and what I have gone through hopefully to help someone else.
About seven or so years ago, I started having sore fingers, they ached, my thumbs ached the worst, I thought it was from moving racks around for over 20 years (as I was in retail clothing business) so we were always moving things around the stores, I am short so I used my thumbs to help carry the racks.
but soon I started to get tired, I mean dam tired. No matter what I did or did not do I was tired, and my thumbs still hurted. It got so bad that one day before Christmas I was sitting in my truck in front of our local Walmart and I looked at the store and thought I just can not go in I am to tired to walk from my truck to the store. Now this was not like me I am like the energizing bunny go, go, go. I could out work someone 1/3 of my age. I thought it must be stress related so pushed through and went in and forced myself around the store and went home. Decided then and there to see a doctor after the holidays for which I did.
The doctor found I had severe hypothyroidism along with the beginning of high blood pressure. She prescribed thyroid meds and I thought ok, now I am going to feel better right away. Well not to be so, my fingers now hurted worst, I kept gaining weight some from the fact that I was so fatigued and other from the hypothyroidism. I just kept going though, because I am never sick. But it got so bad I could not use my fingers especially my thumbs to hold things, pull up my pants, put my bra on, had to buy a front hooker one because of this. Still thought stress and the hypothyroidism. Started a new job, felt even worst, my hands now looked as bad as they felt, swollen, red, blotchy looking, just ugly, and I was working in a jewelry store and had to use my hands all the time to show people rings and such and was so embarrassed of them. I had people comment on them daily. I tired every cream, every soaking concoction on the market to no avail. I tried to hide them when people were around, I could not use them to unlock our cases with the jewelry in at work because of the pain and swelling.
I would drop the jewelry because I could not hold onto anything tight. Right about now I started with another autoammune symptom.
I developed colitis, I could not go anywhere or do anything without the embarrassing symptoms of colitis. I would be working with customers and have to make an excuse to go to the back to use the bathroom, and with colitis you never know how long it will take and if you will have time to make it to the bathroom without an accident. I had a colonoscopy done to see what was the matter and was dx with a rare form of colitis called Lymphocytic which was also an autoimmune disease.
Around the same time I started to have sore joints, and muscles, it started to feel like I was carrying around a 500 pound weight with me. I dragged. I was tired. I was sore. I would have like hot spots, first it would be my ankles, that hurt like heck, then it would be my elbows, etc. But the dragging feeling was the worst. Then it started I could not go up an incline, even one step such as a low curbing was too much for me. My arms could not stay up long enough to wash my hair. Still my doctor blamed it on stress. (As there was a lot of stress in my life at the time). At work I dragged myself through the day, barely. when I got home, I had a hard time to get out of my truck and to go up the steps I had to drag my body up the steps by pulling on the railing and going one by one.
I had from October at this time to March with hives from my ankles to my butt, then went up to my shoulders and bib type area on my chest. It itched so bad I thought I would dye. I again tryed everything, nothing worked. I went to a doctor who gave me steroids but they only helped temporally when they were done the itch and rash came back. I also had such skin sensitivity to tags, material, I had to change to all cotton, cut all tags out of my clothes and stop wearing nylons to work as I could not stand the feeling anymore. I had to stop wearing jewelry also. It stopped by its self in March of the following year.
Now I started to have a sensitivity to the sun, I could not be outside at all without getting red, and feverish feeling. My legs would swell, face, etc. Decided to go see a dermatologist for the hands and the sun thing, he did dx me with photosensitive. But thought I might have lupus, so started with every blood work you can imagine, as this went on for a few months, and my arm weakness and leg weakness got worst, I would also brake out with a red hot flush that would be inside both legs from ankles to knees and would last for a week or so and the same with my forearms, they would be hot to touch and fiery red. My ANA came back positive and speckled pattern so the Dermatologist thought for sure it was lupus in fact told me I had it but did not want to put it down because I would never get Insurance again with that on my record.
Well then started another autoimmune problem. Raynauds disease my hands turned blue, I mean a true blue color, it would happen when I was cold, or stressed. Then they would be white, red, but it was awful I was having a hell of a time with this, then my feet started and my nose. Once at work I looked into a mirror and my nose was blue, nice look for a fancy jewelry store. I started on a calcium channel blocker to help control my Raynauds disease. This did seem to help they also put me on pentoxifylline which is a drug they put you on for this disease. About this time I asked for a referral to a rhuematolgist.
Went to the new rhuematolgist who looked at all my blood work ups and my hands and gave me a dx of scleroderma another rare autoimmune disease.
Sunday, January 6, 2013
January 7, 2013 12:03 AM
Yes it is A.M. This is me since our home burned down almost a year ago. I can not go to bed at night. Now whether or not it is from the fear of falling a sleep and a fire should break out, or what but since that early morning of Feb 24, 2012 fire I have a problem with it. It was my 58th birthday. But Bob and I got out alive, by about two mins, and I am forever grateful to the two men who happen to be going by our home at 3:00AM delivering early morning papers.That kept on knocking on our door to wake us up. God was watching out for us. But still to lose everything you ever owned in your entire life is the most unbelievable thing you can imagine. No under ware no shoes, no coats, no pants no purse, wallet, comb etc. Not to mention everything else that we accumulated with a 38 year marriage and 4 children. Baby clothes, antiques, baby cradles, kids pictures. What more can I say. Enough of self pity.
I have been having tipping issues lately really driving me nuts. I stand at the stove, sink or what ever and I tip, either backwards, forwards, sometimes sideways, always trying to catch myself to straighten myself up so I do not fall. When I say tip I mean tip so far back on my heals that I am almost falling. Mostly backwards. If this keeps up I may have to call Dr. Santillan my neurologist. But I do not want more steroids. I really do not. I also have been finding myself not saying the right words again for things, really having to think about the word I want to use, to try to get it out of my mouth right but still do not. It is not as bad as it has been in the past but I am a little concerned. I did go to my H.E. group and asked if anyone has any ideas so we will see if anybody has had this before and what they did for this. I love that group it has helped me through some panicky moments. I also am getting the zaps in my skull again, I hate that, it hurts only for a brief sec or two, but it still takes me back and when it happens it happens for days at a time. Boy am I a complainer tonight, gee can not stand myself, lol.
Tues I start swimming. I decided I have to start doing something. I love swimming and my doctors have told me that is the best exercise for me with my issues, so just need to make a plan and do it. I just hate putting a suit on and going in front of people after all the steroid use, I think you who have been on steroids know what I am talking about. But I need to do this for me. I just hope it does not aggravate the small fiber neuropathy or the myostis as the night before last I sat in my chair with such pain (sfn) in my legs everywhere and in my feet, knees, crotch area, that no matter what I did or moved it ached. Like I had walked all day shopping. But I am going to give it a real good try.
I was going to start on this blog talking about my illnesses and what they do to me, what the symptoms were the treatments to see if it will help someone else somewhere along the line if they happen upon the blog. But really do not know where to start. Start from the last diagnoses or from the first that is the question.
I think it will be later today when I start the subject.
Yes it is A.M. This is me since our home burned down almost a year ago. I can not go to bed at night. Now whether or not it is from the fear of falling a sleep and a fire should break out, or what but since that early morning of Feb 24, 2012 fire I have a problem with it. It was my 58th birthday. But Bob and I got out alive, by about two mins, and I am forever grateful to the two men who happen to be going by our home at 3:00AM delivering early morning papers.That kept on knocking on our door to wake us up. God was watching out for us. But still to lose everything you ever owned in your entire life is the most unbelievable thing you can imagine. No under ware no shoes, no coats, no pants no purse, wallet, comb etc. Not to mention everything else that we accumulated with a 38 year marriage and 4 children. Baby clothes, antiques, baby cradles, kids pictures. What more can I say. Enough of self pity.
I have been having tipping issues lately really driving me nuts. I stand at the stove, sink or what ever and I tip, either backwards, forwards, sometimes sideways, always trying to catch myself to straighten myself up so I do not fall. When I say tip I mean tip so far back on my heals that I am almost falling. Mostly backwards. If this keeps up I may have to call Dr. Santillan my neurologist. But I do not want more steroids. I really do not. I also have been finding myself not saying the right words again for things, really having to think about the word I want to use, to try to get it out of my mouth right but still do not. It is not as bad as it has been in the past but I am a little concerned. I did go to my H.E. group and asked if anyone has any ideas so we will see if anybody has had this before and what they did for this. I love that group it has helped me through some panicky moments. I also am getting the zaps in my skull again, I hate that, it hurts only for a brief sec or two, but it still takes me back and when it happens it happens for days at a time. Boy am I a complainer tonight, gee can not stand myself, lol.
Tues I start swimming. I decided I have to start doing something. I love swimming and my doctors have told me that is the best exercise for me with my issues, so just need to make a plan and do it. I just hate putting a suit on and going in front of people after all the steroid use, I think you who have been on steroids know what I am talking about. But I need to do this for me. I just hope it does not aggravate the small fiber neuropathy or the myostis as the night before last I sat in my chair with such pain (sfn) in my legs everywhere and in my feet, knees, crotch area, that no matter what I did or moved it ached. Like I had walked all day shopping. But I am going to give it a real good try.
I was going to start on this blog talking about my illnesses and what they do to me, what the symptoms were the treatments to see if it will help someone else somewhere along the line if they happen upon the blog. But really do not know where to start. Start from the last diagnoses or from the first that is the question.
I think it will be later today when I start the subject.
Friday, January 4, 2013
January 4, 2013
Hello, Today is a better day. I am not so darn tired as I have been for the past week. I still am taking it easy though as I feel nauseated for three days now and need to be careful because of the autoimmune suppressants I am taking.
Christmas and New Year is coming to an end. Although I will have my Christmas decorations up for a few weeks for sure before I take them down. I love the peaceful look that they have. It makes me feel good to see them at night, or day. Anybody who knows me, knows that I have them up right after Halloween. Many reasons I do this. Too many years in retail that taught me to do everything early and then too many sick family members and never knowing what may happen right before the Holidays so you prepare ahead. and now because of my energy level, it is not the same, getting everything up in a day or two. Now it takes me a week or two so I have to keep that in mind too. I do not think no matter how many years I have not worked I will still be the same person.
Legs are sore and hurt this afternoon. I have them up on the recliner, but still ache. I have noticed the last few days that it is harder to get up from a kneeling position then it has been for a while. I realize this is from a little over doing. to say the least. lol.
I am frustrated today because I have a friend on the Hashimoto's Encephalitis site in facebook that has got her notice for her disability hearing (her 2nd one) she said they have two expert witnesses that are medical doctors that are there to testify for the state that she does not deserve this. I am so angry at this. This disease is so rare, and is so misunderstood, how can they have any expert medical doctors testify against her. There are no expert specialists in H.E. So there is no way a reg doctor can know enough about her condition. The other thing is that all H.E. patients are different. Some are able to return to work to some extent. But this poor woman has tried several times and each time went into a bad flare. She can not remember, or speak correctly, extreme fatigue etc. She is like I am in so many ways. Sometimes it is hard to describe it to someone else because you learn to live with it and it is second nature to hurt, can not concatenate, fatigue,
etc. I really hope the book we are putting together will help give creditability to the disease. With all the patient stories in one place, with treatments and physical complaints and downfalls. This should I think, help the disability people and the doctors along with the patients with H.E.
I personally know I can not work. I was told to stop working or it could really hurt me in fact I believe the word was it could kill me. So it left me with no choice for which was a good way to tell me to quit. I would have kept trying until I did kill myself because we needed to pay our bills, but the doctor took it out of my hands. Sometimes I wake up and think wow I think I can do something today, bu
Christmas and New Year is coming to an end. Although I will have my Christmas decorations up for a few weeks for sure before I take them down. I love the peaceful look that they have. It makes me feel good to see them at night, or day. Anybody who knows me, knows that I have them up right after Halloween. Many reasons I do this. Too many years in retail that taught me to do everything early and then too many sick family members and never knowing what may happen right before the Holidays so you prepare ahead. and now because of my energy level, it is not the same, getting everything up in a day or two. Now it takes me a week or two so I have to keep that in mind too. I do not think no matter how many years I have not worked I will still be the same person.
Legs are sore and hurt this afternoon. I have them up on the recliner, but still ache. I have noticed the last few days that it is harder to get up from a kneeling position then it has been for a while. I realize this is from a little over doing. to say the least. lol.
I am frustrated today because I have a friend on the Hashimoto's Encephalitis site in facebook that has got her notice for her disability hearing (her 2nd one) she said they have two expert witnesses that are medical doctors that are there to testify for the state that she does not deserve this. I am so angry at this. This disease is so rare, and is so misunderstood, how can they have any expert medical doctors testify against her. There are no expert specialists in H.E. So there is no way a reg doctor can know enough about her condition. The other thing is that all H.E. patients are different. Some are able to return to work to some extent. But this poor woman has tried several times and each time went into a bad flare. She can not remember, or speak correctly, extreme fatigue etc. She is like I am in so many ways. Sometimes it is hard to describe it to someone else because you learn to live with it and it is second nature to hurt, can not concatenate, fatigue,
etc. I really hope the book we are putting together will help give creditability to the disease. With all the patient stories in one place, with treatments and physical complaints and downfalls. This should I think, help the disability people and the doctors along with the patients with H.E.
I personally know I can not work. I was told to stop working or it could really hurt me in fact I believe the word was it could kill me. So it left me with no choice for which was a good way to tell me to quit. I would have kept trying until I did kill myself because we needed to pay our bills, but the doctor took it out of my hands. Sometimes I wake up and think wow I think I can do something today, bu
Wednesday, January 2, 2013
January 2, 2013
Wow, 2013 unbelievable. I will not be able to write much today, used too many spoons from the last few weeks. I am exhausted. Hurt, and too tired to do much right now. Tommrow will be a better day.
Started out thinking it was going to be a good day, got stuff done until about 1:30 pm then could not push myself even one more min. Used too many spoons and then was already in the whole from the last few weeks. Shame on me. lol.
But can not wait to get back to writing in this wonderful blog.
Wow, 2013 unbelievable. I will not be able to write much today, used too many spoons from the last few weeks. I am exhausted. Hurt, and too tired to do much right now. Tommrow will be a better day.
Started out thinking it was going to be a good day, got stuff done until about 1:30 pm then could not push myself even one more min. Used too many spoons and then was already in the whole from the last few weeks. Shame on me. lol.
But can not wait to get back to writing in this wonderful blog.
Tuesday, January 1, 2013
The Beginning
I will warn every one who may stumble upon this blog that my spelling is bad, my grammar may not be perfect but my heart is in this all the way so I do not care this is me
As you see by the blogs title Susie's Autoimmune disorders. It is plural. I have many. The last one to be diagnosed is a biggie. Last November 2011 I was diagnosed with Hashimoto's Encephalitis/Encephalopathy. Which is going to be one of the reasons I may not always make perfect sense to all, or use the right words as it is hard for me to think or to express myself since being diagnosed with this disorder. I will just touch on this lightly as I will go through everything later. (I do not want to scare anyone away right away) lol. H.E. is an autoimmune disease for which your body attacks the neurons in your brain. This makes it very difficult to sometimes speak the words I want to speak, say the right words I want to use. I have no concentration.Or walk straight and not run into the door way, or walk down steps without looking like I had a few too many. I will drag my right foot where it feels like I can not pick it up. This is just a few of the things I endure with this disease. But this is why I bring this one up now in the beginning so you do understand why sometimes you might think (what the heck is she saying) lol, or spelling lol. At least it is a good excuses for someone who has always been bad at spelling. But gee I was always good at concentration, and thinking, and talking was my job. That hurts. My memory was the best I knew of anyone having, but long gone is that.
Well enough excuses for me. Let me tell you what I have so you understand where I am.
I am diagnosed with:
Raynauds disease
Hashimoto's (hypothyroid)
UCTD which is Undifferentiated Connective Tissue Disease with features of Scleroderma
Lymphocytic colitis (which is an autoimmune disease also)
Myositis (Rare autoimmune muscle disease)
Peripheral Neuropathy/ small fiber neuropathy
Hashimoto's Encephalopathy (autoimmune, your own body attacks the neurons in your brain)
Inflammatory progressive myopathy (muscle disease).
R/A they are questioning but blood work comes back negative but hands look like I have it so waiting.
I have swallowing issues< Bladder Issues (Incomplete emptying and no pressure) due to the neuropathy and also the Hashimoto's Encephalopathybr />
IBS
High blood pressure
Esophagus reflux
Hearing problems
Allergies/Asthma
Photosensitive
Depression ( I hate to add this one) but since I am on lexapro and adivan I suppose I should.
They have told me in the past that I had lupus that has changed, then central nervous system lupus that has changed, then MS that has changed I was told point blank I had Systemic Scleroderma a year or so ago then changed to the UCTD with features of scleroderma. I have been checked for everything you can imagine. So lets hope this list does not increase.
Anyone with chronic illnesses knows it is hard to be up all the time, the chronic pain, the doctor appointments, the inability to do things you use to do the way you use to do them.. It is frustrating to say the least. Some days you feel like wow I feel good, and you whip around the next day you are on your butt, grounded, can not walk it hurts, can not stand for long it hurts, your arms feel like they weigh fifty pounds each. Everything you do is an effort. It makes you feel lazy and guilty. Then there are the days you think you can go shopping because you felt ok at home then you get out of your car and walk twenty feet into the grocery store and it hits you, your legs feel like lead weights, you have to pull yourself along, hang on to the cart, pray you make it through the store and get home. The problem is you just can not predict. Nor can you predict how you are going to feel. You can not plan anything to far ahead. It is always last min. There is a great theory some one wrote called the spoon theory which pretty well does describe how people with chronic illnesses feel or handle activities. It basic says if you start your day with 7 spoons and use 3 to vacume 2 to cook dinner, 1 to shower you only have 1 left for the rest of the day, what happens if you have a doctors appointment which is usually for me a 4 spoon experiences, or what if you need something from the grocery store that is 5 in its self. where do the spoons come from, my theory on this theory is that when you use more spoons then you start with, you are now going into the next days reserve. Which sooner or later you have none left and are grounded to a bed or chair for the day. Or worst yet, you may have a flare in one of your diseases if you do this too often. it is a real balancing act of energy or importance. I have learned the word NO finally at the age of 58 and also I have learned what is important to me to do. This was a learning journey to be sure.
Well I will be back, time to go and plan the new year that is here.
Susie
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