Hi Everyone,
I haven't been on in a while. I have actually been really sick. My neuropathy has become a lot worse.

I don't know if anyone remembers but I have idiopathic neuropathy. I have begun to experience muscle weakness in my legs and arms. The only way I can explain it is when I walk up the stairs I feel like I have to stop hold on and let my legs catch up. (I know crazy description). I can't stand in any one spot for more than many 2 minutes if that long. I feel like I have inflammation everywhere in my bodies.

Last year I was seen at Hopkins and tested by a neurologist, gyn, opthomologist. All said severe inflammation. Of course all is of unknown origin. I also saw a GI doctor where I live and was told severe inflammation by endoscopy. I have had what I think is every test available. Hopkins took 32 tubes of blood. Said possible Sjogrens. I had a positive eye test but negative lip biopsy.

Rheumo says fibromyalgia too! He comes in and presses on the points and says it hurts "You have fibro". I don't believe it. On most days any where you press on me hurts.

My rheumo has me getting IVIG. They seemed to help at first. Once a month. For about 4 days I feel like I have a war going on in my body then I seem to feel better. So he raised them to twice a month. At the same time I got a flu shot in between Rx's. I don't know what caused the flare up. I am a nurse and could have caught a viral infx but the symptoms became worse. So we are going back to once a month IVIG.

I have had to stop working. It was such a difficult decision I think I cried alot for a week before I told them. I have been out about two weeks now. They will have a sub in for me for awhile incase I can come back.

My rheumo has tried to get me an appt with a neuromuscular doctor in Phila. She is no longer taking patients so I am on a waiting list for an appointment.

I don't mind saying I'm scared. I have been fighting this for 4 1/2 years with not many true answers and it is getting a lot worse. I try everyday to be strong. I read alot of Christian aspirations and I think it help. After all it is really in his hands but I know I have to do my part and right now I don't know what else to do.

Sorry for the long dialogue. Two questions,
Does anyone recognize these symtoms as something they have encountered?
Does anyone know a really good neuromuscular doc in Phila on surrounding area. I am willing to go to another state.
Sorry, three questions. Is anyone else getting IVIG for neuropathy that is will to talk to me?

Thanks and have a great Thanksgiving. Other than this I have a lot to be thankful for!
hopeful:
PS meds cymbalta, synthyroid, R Lopoic Acid, tramodol (we did discuss the tramadol and cymbalta before I checked with pharmacy and doctor both said at these levels it is OK). Also, right before this all got a lot worse rheumo started me on Savella I was only on for two weeks and went off.
Any info will be appreciated

Dr. Enrica Arnaudo is in Delaware at Christiana if that isn't too far for you. I think very highly of her and she is a neuromuscular specialist.

If Hopkins couldn't point you in the right direction, I really don't know what to recommend, since they are the premier facility.This must be terribly frustrating.

Difficulty going up stairs is one of my primary problems, along with pain, stiffness, and weakness due to muscle wasting, but I have hereditary neuropathy. Lifting my legs gets harder all the time.

Hi Susanne,
What type of Hereditary neuropathy do you have? I had come to the conclusion that my neuropathy was idiopathic and that was it. However, from everything I've read, small fiber neuropathy causes pain but not muscle weakness. That is the reason I am considering going to a neuromuscular doctor. When I went to Hopkins I did not go to their neuropathy specialist. I went to a neurologist and they thought is could possibly be Sjogrens and sent me to the Sjogrens clinic.

Thanks!
Hopeful

I did not have the Athena panel run, so cannot give you the exact CMT variant. Dr. Arnaudo pegged me as a probable for hereditary neuropathy from the beginning, based on my odd gait, high arches, clumsy and uncoordinated childhood, etc. Also my EMG/NCS was abnormal and you do not usually get that with SFN alone. She sent me to Dr. Choudhry at Hopkins for a second opinion. I had the skin biopsy which showed advanced SFN, ( I have little or no sensation to above my knees and it is moving up.) and another EMG/NCS which confirmed the first. The final report was moderate to severe small and large fiber neuropathies with muscle deterioration. I cannot move the toes or front of my left foot, and I experience pain when I try to move my right. My arms and legs "fall asleep" several times each day ( and night). My feet and ankles are visibly wasting.

Hopkins offered to do a spinal tap, the Athena panel, to go as far as I wanted, but both neurologists said there was no treatment for what I have, and seemed to think I was making the best decision to just accept it and seek palliative care.
I did later realize that my birth father's family have definite severe cases, and my 27 year old son has it as well, so that pretty well confirms CMT.

IVIG will not help CMT, so if it does help you, it is probably something else. My understanding is that it helps demylinating neuropathies. Mine is primarily axonal, but as the nerves rot it all runs together.

You may want to return to Hopkins to see a neuropathy specialist, although it can be frustrating and sometimes fruitless to pursue a diagnosis. All you can do sometimes is treat the symptoms.

Look up books on chronic illness and chronic pain. I have found several of them to be very helpful. I did not have a career to give up, so I have not dealt with that loss, but I did have to stop being super mom and give up most of my intricate needlework, skills I spent many years perfecting. There is a lot of grieving with this illness, and new losses all the time.

The "war" for a few days after IVIG is normal. Not sure what they are treating you for though, as it didn't sound like Sjogren's if you have negative labs and a negative biopsy. Eye tests (Schirmer's) just indicate dry eyes, not the cause and there are a zillion things that can cause dry eyes.

I would explore a more thorough work up at JH or just continue the IVIG for a while to see if it helps. It doesn't sound like you've done but a few months, so maybe a longer trial would be beneficial.

If your rheumy thinks this is autoimmune, he needs to try and narrow it down to which disease (because I doubt it Sjogren's). Maybe seeing a rheumy at JH would be a possible path.

Either way, good luck.

Thanks for your informative post. You said it so well, "There is a lot of grieving with this illness and new losses all the time."

Hi Susanne,
Thanks for the information. I doubt I have CMT. The only thing I have that you mentioned is extremely high arches. It has actually been a problem for me. When I wore heels I always got a 1/2 size bigger so my arch would touch the shoe and most of the time that didn't work. I never was really clumsy until I got SFN. I am starting to find myself tripping up the stairs a lot.
As I said, I was just going to forget about finding a dx. Actually for the past year or so, I have just searched for pain management.That is how I eventually started IVIG. I am just worried about the muscle pain. I really didn't think that SFN caused muscle issues. My neurologist told me mine was nonmylinated fibers.
I can't imagine what you went through if your kids were young when this happened. Mine children are all grown. The youngest one is 23. I didn't get SFN until she was 18.
Could you reccomend any of the books you read? I think I am going to try and find a neuromuscular doctor in PA. If not then I might return to Hopkins. I am on a list for a doctor at hahnemann hospital but she has a waiting list in the double digits so I might have to wait for a long time. I'll keep looking around in the meantime.
At times my grieving seems awful but most of the time I hold it together. My family is wonderful but I don't tell them a lot. My husband is terrific so he hears a lot of it but I don't even tell him everything.
Thanks again!
hopeful

Hi en bloc, I do not believe it to be Sjogrens either. I thought the same thing about the Schimers test. I do really like my rheumo but I think he feels I have already had so many test done before I went to him that he hasn't tried to look for much. All my antibodies come back normal so far but they say that doesn't matter it they may eventually. They are giving me IVIG for the SFN which is idiopathic.
Thanks,
Hopeful

You were told correctly...that blood tests can be negative yet still have the AI disease. About 40% are sero-negative for Sjogren's...and sometimes they never turn positive. Mine have always been negative, yet my biopsy show Sjogren's at end stage.

The biopsy will show lymphocytes etc, if there is Sjogren's disease activity.

I'd say give it some more time with the IVIG if you think it's helping at all. The first few day can be tough after infusion. I always had that even 9 years later...but the benefit after those few days was worth it.

My 5 children range from 13-29. I have homeschooled all of them, except the second youngest, whom we let attend school starting in eighth grade. Last year was his senior year and I taught five sections of English at his high school to try and help out- it is a small private school and the English instruction had been terrible. The hardest thing about it was getting up, showered, made up, and dressed up, but it was rewarding. My classes were scheduled in the morning so I could go home and take a nap! I was so relieved when it was over. It was really tough by the end.

We still have three sons at home. I do most of the laundry and all the cooking, but little else. My symptoms didn't really get debilitating until about four years ago, so I didn't have young children.

Sick and Tired of Feeling Sick and Tired by Donohue and Siegel was my favorite, also How to be Sick by Toni Bernhard, which is a little flaky but inspiring.