Hi Everyone,
I have been away from the site for about a year. I was on a quest for answers. I still haven't really gotten any. I'll give you a little background. I started having numbness and tingling in my feet in calves three years ago. It spread upn both my legs and hands and arms to the right side of my face within a few weeks. I saw neuro who did a skin biopsy for small fiber neuropathy that came back positive. He believed it was idiopathic and began the search for a med that could help me. Tried Gaba, neurotin, tegretol and a few others.

Then I went to Dr. Schwartzmann who told me it was RSD. Told me he could make me pain free and I jumped at the chance. I had the ketamine treatments, suffered the hallucinations all the while thinking I did not fit the profile but a promise of being pain free was what I wanted to hear. I apologize if any of you like Dr. Schwartzman. I am just not a big fan.

From there I saw a doctor at Hopkins who said you do not have RSD. Do not get anymore treatments. He sent me to a neuro at Hopkins. They agreed that it was small fiber neuropathy (idiopathic). Then they started saying they thought Sjogrens. I was seen at the sjogrens clinic at hopkins. None of my blood work comes back positive. Had the lip biopsy which was negative. Eye test were positive for Sjogrens. By the way, Hopkins did a skin biopsy that was negative. He said you definitely have neuropathy I don't know why your last biopsy came back positive. Maybe our lab is better. I don't understand this. My neurologist even showed me pictures of the first one. Seems each doctor thinks everything they do is the best or right answer.

So after a few years of my quest for answers I continue to have none. I am more confused than when I started. I currently see a rheumatologist for Sjogrens who tells me I have Fibro too!

Saw an endocronologist last week. I have had hypothyroid for about 18 years. He thinks the neuropathy along with all my symptoms is caused by thyroid disease.

Meanwhile my symptoms are getting worse. I have the burning hands and feet, sharp pains, tingling, electric shocks, etc. I started with bad fasiculations (sorry if spelled wrong) about 3 weeks ago. I have started to develop joint pain. I have a lot of weakness in my legs. Feels like a ran miles just to come up the steps. It's depressing. I use to exercise 5-6 times a week. Running was my sanity. Now steps are hard.

Everyone does seem to agree on one thing, they all say auto immune. I am currently taking Cymbalta, Synthyroid, Lyrica, just started Plaquanil and Tramadol for the pain. I still work for time. Rheumo said it is his job to keep me going for as long as possible. I had an x-ray of my knees to r/o osteoarthritis a few weeks ago. I see rheumo at end of sept and will get the results for that. Seems it can be a symptom of sjogrens.

I see endo again this week to get results of blood work. I am tired of all this. Did anyone else get a lot of different diagnosis. I have been tested for everything. Hopkins took 32 tubes of blood in one sitting.

All this running around and I am pretty much right were I started hypothyroidism ( Hashimotos). Small fiber neuropathy of idiopathic origin. I think I am giving up my quest for a cause. I just want the pain to end or at least improve.

Anyone have any suggestions? Been through all this? Should I stop looking? How is one biopsy positive and the other negative? Is it true Plaquinil may not give results for 6 mths. Has it worked for anyone? Does in significantly lower the immune system. I work in health care. I dont know what to do if my immune system gets compromised.

Sorry for the long rant just feeling sorry for myself today.
Hopeful

I may sound like an odd ball here, but when the doc tell me "you have......." I don't care HOW I got it, my questions are will it go away, if not, what do we do with it. But that's just me.

[QUOTE=aussiemom;800449]I may sound like an odd ball here, but when the doc tell me "you have......." I don't care HOW I got it, my questions are will it go away, if not, what do we do with it. But that's just me.[/QUOT

[QUOTE=hopeful;800451]Maybe it is the fact I work in health care. My mind sees cause and effect. I guess I feel like you can't fight something till you know what it is. I have asked if it will go away. So far everyone tells me the nerves I've lost will not regenerate. They say they have no idea how much worse it will get. Basically, I am hearing my only option is pain management. I guess I decided to write today because whatever this is seems to be getting worse. Just wondering if anyone has any suggestions for me.
Hopeful

--any other immune-modulating therapies, ranging from the blood cancer drug families to IVIg and or plasma exchange?

Admittedly, the latter two are more likely to be recommended for those with motor symptoms, but they have been used in more sensory-based cases as well (especially in suspected Sjogren's).

No other immune therapies yet. My original neurologist tried for IVIG but insurance said no. So far just the anti-seizures (which I was not able to take to many side effects), cymbalta, lyrica and now plaquinal. I didn't realize plasma exchange was a treatment for this.

My neuropathy seems to be getting a lot worse. I can't let my heels touch the bed anymore. I can't have my clothes rub againest my right hip. Certain parts of my arms are painful to the touch. The twitches are enough to drive me crazy. Sometimes I just feel like going to bed and crying. The pain can get unbearable sometimes. But I know I don't have to tell anyone here that.

Usually I am not this discouraged by it. Sometimes it gets to me.

Have you had IVIG or plasma exchange?
thanks,
hopeful

My heart goes out to you. I believe you're looking in the wrong direction. Medical doctors only deal with symptoms, not cause. Educate yourself on nutrition and diet, i.e. clinics in Switzerland for autoimmune diseases, Dr. Rau has written a book on an alkaline diet they use at the clinic. I'm on a modified version of the diet and am better. Take care and keep up the search. Get off the drugs if you can, hard on the liver.

Jellybean Thanks I'll look for that book. I'd love to get off the medication. I had to go off everything about a year and a half ago so they could start me on something different. I could not believe how much the pain had progressed. Spent a few days in bed in tears. I'll give the book a try! Thanks again Hopeful

Hi Hopeful. We sound very very familiar. I use to love the outdoors, and now I have problems leaving my house at most of the time. I know my problem was either started or exacerbated after I took the anti- TnF blocker Humira in 2008 for Ulcerative Colitis. All my tests came back normal except in the beginning my eosinophil count was high for a months. I've been happy with my last two dx's which are small fiber neuropathy and crps. The crps was given to me by dr schwarzman who wants to start ketamine in the next few months. I'm curious if the treatment helped you at all? The narcotic meds don't help as much anymore. One thing that does offer me some relief is Alpha- Lipoic Acid. Most "natural" remedies make me feel worse, but I swear by the ALA. I know the frustration you feel not know what exactly is going on, getting a bunch of different dx's (two of my mine came in 09 from Hopkins neurology and dermatology dept), I also know the feeling you get when someone say, "you look fine!" Send me an email if you want vent or share some stories. I'd love someone to talk with as well. Please take care, Anthony.