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

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

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

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.

RASH, HIVES, HE, IVIG, CONNECTIVE TISSUE?

Well now, lets see rashes all over my legs, on both arms, lets see what could it be? From the IVIG, the HE, Connective tissue disease, photosensitivity? So what is it from? Should I go to the dermatologist, the rheumatologist, the primary? Who should I see? I pray it is not from the IVIG for I would not want to stop getting that miracle treatment. But what ever it is I have had it for a week, slightly itchy but it reminds me of what I had back before all of my dxs of the autoimmune  diseases. I had a rash/hives on the back of my legs from ankle to butt, then on the arms, and it lasted for  8 months, yes 8 months, had treatments of creams, powders, pills, steroids, I had it all, steroids would stop the intense itching for about a day or too, but when the steroids were done the itching came back. So much worst at night. I stopped wearing pantyhose, tights, had to wear the loosest clothing I could find as not to irritate it more. So watching it close.

 We are taking a survey of symptoms on our Hashimoto's Encephalopathy page one of them is about rashes. Many, many of us had rashes that the doctors could not explain before the dx of HE. Weird, because why or what in the brain would cause this? Rashes I would think is a  connective tissue thing, so I know why I had it, but why the others, they do not have the issues I have just the HE so really why? I think as time goes on and more research is done they will find a connection that they do not know now.

Thoughts at large. Warning, lol. I want to know why? Why are people not as giving of their patience and time and love as I was when I was a young married woman. I have some personal family issues going on, and yet the people that I depended on and family members I trusted my life with and love with all my heart have disappointed me beyond words. I have always been there for all of them, no matter the cost to me. But yet now I am getting the "I don't want to hear it" Don't bother us with this any more" It upsets us too much. Well no one stops to think of what I have endured through the years and all the problems. It is a selfishness I never thought I would see from my family. I am hurt. First I am told they want to know what is going on, mad because I keep the issues to myself, then they are upset when I do tell them.
They obviously don't recall all the times I took with my sick brother, my mom for years, their own illness, and personal issues. But here I am Ill myself for which I hate to admit too, hate it. But they are causing more stress for me then I need, they are adding more to me, then I deserve by being selfish, and self serving. Yes I understand not wanting to think  about bad stuff things that make us upset, but I have had years of it, years, and kept going on, yet now, once again I am alone, dealing with issues, that everyone said they wanted to know, but really didn't.

That is enough of that. So one does not wonder why my immune system is so haywire. Maybe I should not have cared or took care of people I loved for all these years right, maybe I would not be so sick? But this is not my personality, my nature. I was brought up to care about people, love them all and I still do, even the people who hurt me, I pray for, and care about. So I guess things are just different now.

Now really that is enough, lol. Done, finished.  To all that maybe reading this that would be interested, we are now selling Hashimoto's Encephalopathy T shirts. They are available on our www.hesaonline.org  web site. They are very nice and would help to fund research on this very rare disease.

Hope all had a wonderful labor day weekend. I can not believe it is Sept 1, 2104.

Next IVIG

I had an appointment with my rheumatologist Weds. He is the one that recommended for me to receive the IVIG, convinced my insurance company that I needed it. I so appreciate all his effort. But anyway went Weds to discuss what to do with the severe reaction I got from the first dose of IVIG. He and I have a plan for next month when I receive my  next round of this magical IV. We will divide the dosage up into three days. We will slow the drip down so that I am not receiving it so fast. So I am thinking I will be there for about six hours instead of four and a half for three days in a row. This is fine with me. I want it to work, I want to feel better, I want to be able to walk for longer then five mins. Take the dogs for a walk. Shop with my girls. This is my goal. But I can not tolerate the headache. I know now I should have gone to the ER. But I am stubborn, but next time, I wont chance it. I will go if it gets that bad again but hopefully it wont with the changes. Dr. also said he will order a IV of some anti nausea meds also before I get the IVIG. The other pills he ordered for me I will take the three days of the IVIG to help calm the headache. We will go from here and see how this works. Crossing fingers, toes, legs, arms, lol what ever I can cross.

By Saturday of the week of the IVIG I was feeling better, slight headache, slight nausea. But not too bad, but Sunday, I felt so much better I could not believe it. I actually went out and cleaned the garage, lol. I had energy, and the pain was minimal. I was so proud of myself and so hopeful with this treatment. But then Monday came, and I slept almost all day, lol, Tuesday afternoon, slept also. lol. Cleaning the garage was worth it though, one good day is worth all the cruddy ones.

I have had a week of blood pressure issues, up, down, up, down. and a feeling of burning, the house will be a comfortable 70 degrees but to me it feels like it is 100 degrees. I have asked others who receive IVIG and it seems to be a common side affect.

Our Hashimoto's Encephalopathy HESA foundation is moving forward. We are producing our first ever t shirt, I have a design we will use for a hoodie. We will do buttons, caps, etc. We are pushing for awareness one item at a time. Also starting to take personal stories from HE sufferers for the 2nd addition of our book. Hopefully after the first of the year, at least in 2015 we hope to have it out. Along with the short documentary that my son Scott is working on. We have not moved mountains yet but we have moved small hills and I for one feel very proud of what we all have accomplished. It brings something good out of something not so good, being sick with chronic illnesses.

First IVIG In Fusion Yesterday WOW

Wow
I am sick, the IVIG whopped my ass and they only did half. The experience its self was nothing, went easy, but the very well educated nurse said, I do not believe we can do this all in one day, she said the first loading dose is always higher. So 4 1/2 hours later I was done with my first treatment, a small headache coming but she gave me something in my IV to help minimize. Got home, felt, funny, but not like everyone talks about.  Talked to my children and fellow IVIGers and said wow I am going to be a lucky one I think, and WHAM it hit. The headache from HELL. I could not believe it, all  night long, I could not sleep move my head, or leave it still, no matter what I did, I hurt so bad. Thought of the ER because you can get Meningitis but sweated it out. Then I got cold, shaking, then got up at five am to go again for second treatment and wanted to cry. So much pain, and then nausea oh my, I thought I was going to loose it. I laid back on the bed, trying to close my eyes to stop the nausea, the headache, tried to call the infusion center to ask if I could skip todays, but could not get anyone, my appointment was for 8:30am so laid on the bed until 8:00 and took a fast shower, brushed my teeth, got dressed same clothes as yesterday I was to sick to care, and off I went. Got there and the great nurse I had said, oh wow maybe we should put off todays. A sigh of relief came over me in between the pain in my head and the nausea in my stomach. She called my rheumy who said, lets wait until next week to finish it. prescribed anti nausea pills, (that worked like magic). But the headache, wow, he prescribed some pills for tonight when I go to bed, said they will make me feel to dizzy to take during the day. (Oh how I wanted to take those dam pills). So went to bed, with the dogs, the little one barking for which I wanted to strangle him, the pain every time he barked. But made it through the day, now sitting here trying to get water in me as I know you are suppose to drink a lot of it and I wasn't because it hurt to swallow even the swallowing motion moved my head.
So moral of this story is, I sure as hell hope this is the answer to my autoimmune diseases, and small fiber neuropathy. Because this pain has to be worth something, right?