Doctors, specialists, ER, IVIG, YIKES. I have had such a nice long period of time I did not have to go for tests all the time, like I was doing for so many years and got spoiled. So now we begin over again for which I hate.
The IVIG this month landed me in the ER. It has been causing me symptoms of breathing difficulties for which the doctor my rheumy gave me something else to take for five days before the treatment and I did. But by the second day of the IVIG I could feel it. I was breathing hard. By the time I got home I felt like I could not breath hardly at all. I was having such a time, I ended up in the er and blood pressure was 203/90, they treated it like I was just anxious, they did take xrays and that is all, no blood work, no nothing no ekg as for I have a horrible family history of heart disease. They were very nice but really? They gave me two adivans and said it was a typical reaction to the ivig. Well if that was the case, I would have been given steroids or Benadryl. So next day my doctor was called and he said same thing if it was a reaction why did they not treat it as such. HUM> Well my rheumy did give me preds before the ivig and it did help. But felt I could not breathe good for three days after. I did a lot of research and I did read that ivig can over load you with fluid, and cause you to be short of breath. So maybe that is it. But decided that I should see a cardio doc with my family history and my autoimmune diseases I felt it was and is a smart move. But oh I hate to start with another Doctor. Hate it.
So then I made an appointment for a neuro for my Hashimoto's Encephalopathy and small fiber neuropathy a new one, in town. My doc that I love is five hours away and when I was in the er last week I thought about this. What would I do if I needed her. I am going to see how this doctor is what he knows about the rare diseases I do have and just maybe if I am lucky he will be willing to work with my doc in Lacrosse so I can have both I know that is a lot to ask for. But I am hoping.
Then I decided I should go to my primary, for the high blood pressure I had in the er, and have her check my thyroid. Well she just did a TSH I don't know why but that is the only one she did, it came back high normal. Mine with HE is around 1.75 and this came back 3.95 well that is to high for me, with hashimoto thyroiditis too and hypothyroidism, and the HE. So I emailed her and suggested that maybe my thyroid meds should be upped and she emailed me back and said she wants to send me to an endo (Another doctor) GEE. I just don't want to start over again when I know a neuro can watch it with the HE I have. My Lacrosse doctor always did the thyroid panels and controlled my thyroid meds for me.
So I feel like here I go again. I don't like starting off the new year this way. lol
We had sad news today also, a member of our Hashimoto's Encephalopathy group young daughter who has HE passed away yesterday with complications of HE. I am just so sad. So sad. It is a crime that the medical world does not have enough information on this rare disease. Autoimmune diseases in general have not enough attention in the medical world, yet affects many people. More then ever before. This family has now lost this beautiful young lady who had a full life ahead of her.
We are working on awareness we are writing another edition of Understanding Hashimoto's Encephalopathy, one step at a time to bring awareness to the public and medical world. We are still looking for stories of people with HE. So if you have HE, and would like to submit your story, please contact me. We would love to have your story.
We also are setting up a face book support group called "Understanding Hashimoto's Encephalopathy support group" This group is set up to help people who maybe looking for answers or needing information. They do not have to be dx with HE. We just want to support anyone who is out there going through the dx hell.
Once again thank you for reading and supporting my posts.
Susie
Tuesday, January 20, 2015
Monday, January 5, 2015
Great article on 10 most painful conditions
Top Painful Medical Conditions
The 10 Most Painful Conditions
Doctors divulge the most excruciating illnesses. Ouch.
After an ER doc determined that a tiny kidney stone caused my husband's sudden agony last year, a nurse came to deliver more pain meds and a dose of sympathy: "I passed a stone a couple of months ago, and it was worse than any of my four labors," she told him. Indeed, when Prevention asked doctors for their opinions about which conditions trigger the most horrific pain, kidney stones made the list. But even they're outranked by several other diagnoses with more intense, longer-lasting distress. Here, from bad to horrible, are the worst of the worst:
10. Post-Surgical Pain
Whether you were in the hospital for work on your shoulder or your ticker, you're at risk for nerve injuries that lead to constant pain. "Some research has shown that half of people who have chest surgery develop chronic pain," says Lynn Webster, MD, past president of the American Society of Pain Medicine. "In the future, we'll be able to identify, through genotyping, who is most at risk." In the meantime, he cautions patients not tough it out in the hospital because managing the acute pain lessens the risk of long-term problems.
9. Kidney Stones
The pain from these itsy bitsy masses (which range in size from a grain of salt to a pearl) comes on fast and furious, with the back, lower abdomen, and groin area being in the greatest discomfort. Most of the time, doctors prescribe pain-killers and advise you to drink plenty of water and wait. Once you pee out the stone, the pain subsidies almost immediately. But don't think you're out of the woods yet: The doctor will probably suggest that you have the stone tested, because, depending on the type, changes in your diet may prevent the whole ordeal from happening again.
8. Chronic Lower-Back Pain
Photo by I Love Images/Getty Images
"Lower back pain is like death and taxes; everybody gets it at some point," says out Sean Mackey, MD, PhD, chief of the division of pain medicine at Stanford University School of Medicine. About 9 in 10 of those patients recover fairly quickly, he says, but for the remainder, the pain becomes chronic and life-altering. "The severity of the original injury and how prone you are to anxiety plays a role in whether your pain will persist," he says. Physical therapy focused on core strengthening is one of the most effective treatments.
7. Peripheral Neuropathy
Commonly caused by diabetes, damage to the tips of the nerves going to the fingers, hands, and toes trigger this pain. "I've been told that it feels like walking on razor blades," says Charles Kim, MD, assistant professor of rehabilitation and anesthesiology at NYU Lagone Medical Center. Anti-seizure medications calm down irritated nerves, but Kim says exercise is also important to improve blood flow.
6. Cancer Pain
Whether it's from the disease itself, treatments like chemo, or a combo of the two, some cancer patients—especially those with advanced disease—suffer immense pain. Among the most agonizing cancers: pancreatic, brain tumors, and sarcomas. Doctors prescribe medications based on the type of pain; for instance, steroids may help pain caused by swelling.
5. Postherpetic Neuralgia
It's the pain that lingers in about 10% of patients who come down with shingles, the mature version of chickenpox. (After you have chickenpox, the virus lies dormant in your brain and spinal cord and may re-activate as shingles as you age.) "When the shingles rash goes away, some patients are left with burning nerve pain that's difficult to treat," says Mackey.
4. Trigeminal Neuralgia
Infections, tumors, and other conditions can trigger this pain in the trigeminal nerve, which carries sensation from your face to your brain. "Patients describe it as feeling their face is on fire," says Kim. The pain tends to be throbbing, and in some cases, occurs every few minutes with the right side of the face most often being affected. One of the go-to treatments: anti-seizure medication.
3. Interstitial Cystitis
It's a fancy way to refer to an inflamed bladder. "Patients tell me that it feels like their pelvic area is burning all the time," says Webster. In extreme cases, sufferers may urinate 60 times a day. Physical therapy, nerve stimulation, and medications, such as anti-inflammatories, help provide relief.
2. Complex Regional Pain Syndrome
Although the name of this condition sounds bogus, the pain is all too real, typically occurring in one of the limbs after trauma or simple injury—even a run-of-the-mill twisted ankle or broken arm. The pain and swelling starts in a small area then spreads throughout the limb, causing it to feel "like a blow torch," in the words of one sufferer. "I saw a patient who came in on winter day with one of his pant legs cut off," says Kim. "Just having the material touch his skin brought about too much pain to bear." Doctors aren't sure why some people develop the condition, though they generally agree there's a genetic component, and more women are affected than men. An intense combo of rehab, medications, and neuro-stimulation helps control the pain.
1. Cluster Headaches
Photo by Dirima/Getty IMages
More debilitating than a migraine, cluster headaches produce sudden, sharp pain that's usually concentrated around one eye or one side of the head, and episodes occur in clusters for weeks or months. "It's nicknamed the suicide headache because patients have suicidal thoughts to get away from the pain," says Mackey. "My patients have told me that it makes them want to bang their heads against a wall or take a drill to their head." While the cause isn't known, steroids, calcium-channel blockers, and anti-seizure medication may bring relief for sufferers, most of whom are men.
MORE:
Tuesday, December 16, 2014
Merry Christmas pain or no pain
I love the holidays and always have since I was a little girl, (many, many years ago). lol. So when I knew I had to have a three day treatment of IVIG during December I was bummed out. It is not just the three days of sitting in a chair hooked up to two IVs for four-five hours, but it is the sickness that comes with it for days after. I was still nauseated Monday after having the IVIG Wed, Thurs, Fri so sick Sat, Sun and Monday and hoping today is better. I have hope. But gee it is Dec. Who has time to take a week off in the middle of Dec? lol. But I have made myself understand it is ok. If I do not take care of myself then how can I enjoy my family when they come for Christmas, or that beautiful Grandbaby. So sit on my butt and do nothing for six days and just know I will get everything done regardless and if I don't, I have a good excuses lol.
I have to say the IVIG did really help last month, I felt good right up to the time of getting the new treatment this month. This is the first time that has happen. So it was great to have that energy. Still pain, but with energy it is not as bad.
I do have an appointment with the rheumy next week, I will talk to him about a few things that are concerning me about the IVIG. Number 1 when I am done, I feel I can not breath that good, chest is heavy I read that Ivig can cause this to happen as it is infused it can fill your cavity's around your lungs, which then takes time to get rid of as the IVIG fluid takes longer to leave the body more so then normal liquid. But in a contradiction it also is said it dehydrates your body thus the reason to hydrate well during and after infusions. It is still confusing to me. But I feel so bloated after for about 4 days. Also I feel some of my encephalopathy symptoms are getting worst, or coming back or flaring or how ever one wants to put it. Now whether or not it is the time of the year but I think it is because the Imuran was decreased too low. I find myself not being able to decide on what to do with my hands when holding something in both, I look at the right, I look at the left one, and I am confused on what to do first. I use to get this a lot. My brain is on overload again, over whelmed, and this is not from Christmas doings as I am ready completely. But other things in my life. But I normally could handle. So this is making me concerned. I know they do not like you on the big guns like Imuran for to long but I can tell, I think it needs to be increased. Also balance is bad, almost fell into the Christmas tree, I don't know what I would have done if I did not catch myself from all the presents that were under the tree. Ripped a few open trying not to take the tree out. But it scares me. Also having constant headaches. Everyday. Nothing works for them, nothing. So I will ask him he is not my neuro but he is the one that decreased the dose of the Imuran because the IVIG was working so well for other autoimmune diseases.
Well another Merry Christmas and a Healthy and happy New Year to you all and I appreciate you all reading my post. It gives me a purpose. :).
I love you ,
Susie
I have to say the IVIG did really help last month, I felt good right up to the time of getting the new treatment this month. This is the first time that has happen. So it was great to have that energy. Still pain, but with energy it is not as bad.
I do have an appointment with the rheumy next week, I will talk to him about a few things that are concerning me about the IVIG. Number 1 when I am done, I feel I can not breath that good, chest is heavy I read that Ivig can cause this to happen as it is infused it can fill your cavity's around your lungs, which then takes time to get rid of as the IVIG fluid takes longer to leave the body more so then normal liquid. But in a contradiction it also is said it dehydrates your body thus the reason to hydrate well during and after infusions. It is still confusing to me. But I feel so bloated after for about 4 days. Also I feel some of my encephalopathy symptoms are getting worst, or coming back or flaring or how ever one wants to put it. Now whether or not it is the time of the year but I think it is because the Imuran was decreased too low. I find myself not being able to decide on what to do with my hands when holding something in both, I look at the right, I look at the left one, and I am confused on what to do first. I use to get this a lot. My brain is on overload again, over whelmed, and this is not from Christmas doings as I am ready completely. But other things in my life. But I normally could handle. So this is making me concerned. I know they do not like you on the big guns like Imuran for to long but I can tell, I think it needs to be increased. Also balance is bad, almost fell into the Christmas tree, I don't know what I would have done if I did not catch myself from all the presents that were under the tree. Ripped a few open trying not to take the tree out. But it scares me. Also having constant headaches. Everyday. Nothing works for them, nothing. So I will ask him he is not my neuro but he is the one that decreased the dose of the Imuran because the IVIG was working so well for other autoimmune diseases.
Well another Merry Christmas and a Healthy and happy New Year to you all and I appreciate you all reading my post. It gives me a purpose. :).
I love you ,
Susie
Thursday, November 20, 2014
I thought this was such an informative article about two of my issues I thought I would post it and hope it helps others too, it does explain it to me why I feel the way I do. Sometimes I need that.
Top 10 Peripheral Neuropathy & Sjögren’s Facts:
1. Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjögren’s do not come on suddenly, reduction of neuropathic pain can take a while.
2. Initial and predominant neuropathies in Sjögren’s can occur anywhere in the feet, thighs, hands, arms, torso and/or face.
3. Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach.
4. While the class of tricyclic anti-depressants (TCAs) often constitutes a first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjögren’s patients.
5. Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests.
6. Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of three millimeters and not requiring any stitches), can help in the diagnosis.
7. A relatively rare neuropathy can cause significant weakness in Sjögren’s patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called “mononeuritis multiplex” occurs because the blood-flow through vessels which nourishes nerves is suddenly compromised.
8. In general, immunosuppressive medications are almost always warranted to treat “mononeuritis multiplex” neuropathy. In contrast, the role of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.
9. Sjögren’s patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur.
10. Neuropathic pain can be alleviated and assuaged, although there may initially be a “trial-and-error” process with different and perhaps multiple agents.
The information from this post, provided by rheumatologist
Monday, November 17, 2014
Fourth IVIG Treatment
I had my fourth treatment this past week. Wed, Thurs, Fri. It is Monday and I still have a headache. Now whether it is from the IVIG or some other wonderful thing I have, it is there, can not hardly see. I know I did not take it easy after the treatment that so many tell you to do, but no doctor has ever told me to go home and rest, it is just that you feel so crappy that you do. LOL. This time I felt like I was going to collasp. My legs still do not have the strength in them. I have done a lot, this weekend regardless, pushing it, it is this time of the year, and giving up almost a week a month drives me nuts. But if it helps it is worth it. The first two I had was like a miracle drug, I walked a mile, I did things around the house I have not been able to do, but now the last two are just sort of bla, do not recognize any difference. I did read that there was a bad batch of IVIG and maybe that was me, I also read that a doctor had told one of his patients that it is like a crap shoot, because you have 1000 people donating their plasma and you never know what you are getting. That makes sense to me, but for 24,000 a shot, I would think I should be running a marathon by now lol. I feel guilty over the cost of this medication, I really, really do. I pray it helps me stop the progression of my autoimmune diseases and sfn.
I don't know if I am having a relasp of HE (autoimmune/ Hashimoto's Encephalopathy) or not. I have headaches the shooting brain pain, my legs are so bad, I can not walk around only in the house, my balance is iffy. My brain hurts. Truly it does. My eyes hurt. My rheumy cut back my Imuran to 25mg a day compared to 200mg I was taking when first dx with HE and myositis. But this has been a gradual thing, was on 50mg which seemed to be ok, but now three months into the decrease I am having these symptoms, and even dragging the right leg. I can not believe this as getting the IVIG should be enough but I guess it is not. I am going to try to hold out until I go see the rheumy in Dec, but if I can not I will email him and my neuro and see if they can discuss this between the two of them. I am so sure it is due to the lowering of the med. He wants me off because it does have serious side affects, such as cancer, so I respect him for wanting me off.
Well hope to write more later hopefully I will tell you all I am dancing, and singing, and walking miles lol
Susie
I don't know if I am having a relasp of HE (autoimmune/ Hashimoto's Encephalopathy) or not. I have headaches the shooting brain pain, my legs are so bad, I can not walk around only in the house, my balance is iffy. My brain hurts. Truly it does. My eyes hurt. My rheumy cut back my Imuran to 25mg a day compared to 200mg I was taking when first dx with HE and myositis. But this has been a gradual thing, was on 50mg which seemed to be ok, but now three months into the decrease I am having these symptoms, and even dragging the right leg. I can not believe this as getting the IVIG should be enough but I guess it is not. I am going to try to hold out until I go see the rheumy in Dec, but if I can not I will email him and my neuro and see if they can discuss this between the two of them. I am so sure it is due to the lowering of the med. He wants me off because it does have serious side affects, such as cancer, so I respect him for wanting me off.
Well hope to write more later hopefully I will tell you all I am dancing, and singing, and walking miles lol
Susie
Thursday, October 2, 2014
Another Week, Another Treatment
One more week to go. Another treatment of IVIG. This time it will be for 4 hours each day to help with headaches. So if it still is bad I will ask to go longer.
It is so weird the connective tissue disease that I have and has caused swelling in my hands for a few years now is getting better since the last treatment. I will say I did push those two days I had such energy and felt so good. Suffered with my good old joint pain and muscle pain, so will be more careful when I get the next treatment. I know I just want to push it to fast, so hopeful, so excited over the possibility's of what I might be able to do again. I know I will still be chronically Ill but maybe with a little more water in the cup half full.
Lets talk about Hashimoto's Encephalopathy for a min. Still looking for stories of patients or loved ones for the 2nd edition to come out sometime next spring. We would love your story. Every time someone tells me they have bought the book and it has helped them as they do not feel so alone after their dx of HE. I feel so good inside. That is what it is about. Helping others who are dx with this rare disease. We now have T shirts that have our logo on them done and ready to ship to me to send out exciting. Then we will do a hoodie and caps. I am excited over this as I feel anything we can do to bring awareness is only going to help. We were also asked to speak to a convention of 300-500 student nurses next spring how wonderful that would be to help bring awareness to these young and upcoming students. Maybe just one would help to recognize the symptoms of one patient who has HE would be so worth it. We will see it is 15 hours away from me. Our Non profit would have to pay for the transportation, but we will see what we can figure out. Maybe if we sell enough T shirts and sweatshirts, lol. But it is an honor to be asked.
We have gained so many more HE patients to the website since the book came out. Amazing. It is suppose to be so rare, so under dx yet we are seeing such an up swing of people being dx. There still are the poor patients trying to get dx, doctors who still say they do not believe in the dx, (what) how can they say that when it is recognized government rare disease site. This is where there is more need for education even for the doctors.
Well time to go, until we meet again,
xoxoxo susie
It is so weird the connective tissue disease that I have and has caused swelling in my hands for a few years now is getting better since the last treatment. I will say I did push those two days I had such energy and felt so good. Suffered with my good old joint pain and muscle pain, so will be more careful when I get the next treatment. I know I just want to push it to fast, so hopeful, so excited over the possibility's of what I might be able to do again. I know I will still be chronically Ill but maybe with a little more water in the cup half full.
Lets talk about Hashimoto's Encephalopathy for a min. Still looking for stories of patients or loved ones for the 2nd edition to come out sometime next spring. We would love your story. Every time someone tells me they have bought the book and it has helped them as they do not feel so alone after their dx of HE. I feel so good inside. That is what it is about. Helping others who are dx with this rare disease. We now have T shirts that have our logo on them done and ready to ship to me to send out exciting. Then we will do a hoodie and caps. I am excited over this as I feel anything we can do to bring awareness is only going to help. We were also asked to speak to a convention of 300-500 student nurses next spring how wonderful that would be to help bring awareness to these young and upcoming students. Maybe just one would help to recognize the symptoms of one patient who has HE would be so worth it. We will see it is 15 hours away from me. Our Non profit would have to pay for the transportation, but we will see what we can figure out. Maybe if we sell enough T shirts and sweatshirts, lol. But it is an honor to be asked.
We have gained so many more HE patients to the website since the book came out. Amazing. It is suppose to be so rare, so under dx yet we are seeing such an up swing of people being dx. There still are the poor patients trying to get dx, doctors who still say they do not believe in the dx, (what) how can they say that when it is recognized government rare disease site. This is where there is more need for education even for the doctors.
Well time to go, until we meet again,
xoxoxo susie
Wednesday, September 24, 2014
2nd Round Of IVIG Is The Side Affects Worth It?
Yes, Yes, Yes. The side affects are worth it. I did have the headache from Hell again, had to hide my head in pillows so no light would hit my face and eyes, could not move because of the pain. My pain pill did not touch the headache pain, took extra strength Tylenol instead. But here it is one week later, and I can tell you it is so worth how I feel.
Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.
So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.
IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover this treatment. This is too bad. It will add such a better higher quality of life.
It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.
Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.
So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.
IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover this treatment. This is too bad. It will add such a better higher quality of life.
It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.
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