Originally Posted by JB63

to be given several diagnostic opinions and continue to get worse. I too feel if they know what it is I can be treated and get better, but this is not always the reality. No doc will tell you that you will get better for certain, CYA from lawsuits, I guess. All you want to do is get better, regardless of the cause, and it is a long and heartbreaking journey. I hope you can get some resolution soon. I know it is little consolation, but most of us here have gone though this crazy uncertainty, so rant away, we hear you.

I am waiting to see the neuro at the end of the month about IVIG. I do not know if insurance will pay. It is for diagnostic purposes. 2 doses and eval for improvement. I have a new component to my motor PN...pins and needles in my feet, entering the sensory zone.

Originally Posted by hopeful

Can you explain to me what you mean by entering the sensory zone.

Originally Posted by bobthebuilder54

Hopeful, Hello,
I am new here and reading your post sounds aful familiar. I am and have been going around the dx circle for a few years. When people ask me what I have I do not even know what to say to them or where to start. I also am hypothryoid and have been for six years, it has been controlled for that long also, but just had an ANA panel done that said that my hypothryoidism was due to an autioammune disease. My question to you is did they do a ANA panel on you to dx the schrojens (sorry spelled wrong)? Are they questioning any other autioammune dx such as lupus, scleroderma? Do you have weakness in your legs, thighs, arms? Are you allergic to the sun? Sorry for so many questions lol. Just interested. I am so sorry that you are going thru this dx night mare also. I also was told mine would not get better and that it would progressivly get worst hopefully slowly
Susie

Originally Posted by hopeful

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