Still no real answers
 

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

Anyone suggest--
 

--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

I have, in the past, used both IVIG and plasmapheresis due to Sjogren's with neurological manifestations as well as antiphospholipid syndrome and can tell you IVIG (for neuropathy treatment) usually requires (due to cost) positive nerve tests/biopsy in order to be covered by insurance. I also can't imagine plasmapheresis (big guns) being used until they have determined the cause and/or at least documented something specific that would benefit from this.

As for Plaquenil, it is a DMARD (disease modifying anti-rheumatic drug) that is used for autoimmune diseases to help 'modify' the immune system and reduce symptoms. It typically helps with joint pain, fatigue and maybe some simple AI disease symptoms, but not neuropathy. It does take up to 6 months to begin working, but again don't get your hopes up for neuropathy relief.

Hopefully you'll do well with the cymbalta and lyrica. Pain mgmt can be a frustrating process, but I trust you'll find the right combination at some point.

Well, it is true that PN can result from hypothyroid.

That is where mine comes from.

My PN improved about 90% after stabilizing my low thyroid.
I am left with the residual 10% which is not severe.

Now that I am much older, I do have numbness sometimes in my right hand, when my blood sugar gets too low. If I eat something then, it goes away.

There are many metabolic things going on inside people. We all are reacting in some way to our toxic environment.

Our 13 yr old cat has a thyroid nodule. If one searches thyroid issues in felines, there appears a link to environmental contaminants that are thyroid disrupters.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2612591/

Pet cats have been increasingly developing thyroid issues since the 1970's and some believe this is a marker for human thyroid disruption as well.

It is very difficult to find answers for some people with chronic issues yet today.

There are things a person can do. Get tested for B12 and Vit D levels. Supplement if you are low. Expect to take charge of your test results because doctors still do not interpret them accurately where vitamins are concerned. Try to support your mitochondria with acetyl carnitine, CoQ-10. Investigate antioxidants, and apply them for their free radical scavenging actions. Grapeseed extract and quality high absorption curcumin. Avoid MSG in foods you consume. Supplement magnesium either orally or topically if you do not eat whole foods that commonly supply this critical mineral.

These interventions may help you feel better on a daily basis.

It's frustrating
 

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.:grouphug:

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.

Hi Mrs D, I have all those levels checked several times. The only thing that shows is anemia and that isn't too low. I started magnesium and a few other things. So many docs say different things. Believe it or not most tell me not to take supplements unless my levels are low. I had one tell me do not take any supplements at all, only your iron. Throw all the rest in the trash. That was a doctor that heads the Sjogrens clinic in one of the top hospitals. I am so confused at this point. How do you decide what you are in need of if all your levels come back ok.
Also, did you have a positive nerve biopsy. I am curious because you said if treatment for the low thyroid you neuropathy got 90% better. Every doctor I've seen so far has told me my neuropathy will not get better. Are they mistaken? (I hope so)
Hopeful