Please help

    • February 16, 2013 at 9:59 pm

      I had another ncv which showed no large fiber nueropathy but did show that reinnervation has taken place. Knowing these smaller sprouts are much less efficient that the originals I can understand some of my ongoing pain and sensations. But, I also had a small nerve fiber biopsy that came back normal. WHY am I continuing to have pain, pins and needles, stocking and glove, shooting and stabbing pain, symptoms of autonomic involvement…blood pressure wacky, body temp will drop to 93.0 even when dressed appropriately and with the house a comfortable 70 degrees, sweating with little exertion or no sweating with exertion, I get hiccups if i turn over or stand up, I often am light headed when standing from a sitting or lying position, heart palpitations, sudden shortness of breath/bear hug sensation, digestive issues. There is apparently no place here where I can have the autonomic testing done and the neuro (third, fourth one now?) doesn’t seem interested in trying to find where such testing can be done to rule out or get answers as to why these things are happening. 

      Getting the letter in the mail saying the biopsy was normal should be great news and yet I am bawling my eyes out and so depressed because again I have no answers. I really am trying to find a bright side, but on a pain day like today it is really really hard not to feel even worse when medical test tell me there is nothing wrong. I know all of this is NOT in my head, I am not making any of this up, with the proof of reinnervation at least I have that to ‘validate’ some of what is still going on. Is this why I have the stocking and glove sensations, the pins and needles, every symptom of neuropathy without actually having neuropathy?? The right side of my face is still numb, my soft palette is numb, I still have issues swallowing, and no gag reflex although from what i gathered the other reflexes are okay now. What the heck is going on?! Can anyone please shed some light on this for me because I feel like I have gone crazy and this is all something I made up or am lying about. I hate feeling that way and I hate that I continue to hurt and experience the problems that I do. 

      I have an overlap dx of fibromyalgia. Is THAT the continuing cause of all this?? Living with chronic pain and being med sensitive leaves a person with very few, if any, options. It is hard to ‘live within my limitations’ because they vary greatly from day to day! I have very little knowledge after almost 7 years of this as to what my limits are and what will or will not negatively or positively impact my quality of life. I am so depressed that I am finding it difficult to see a bright side, to accept and move on with my life. I am unable to take the usual meds for relief because the only thing left to touch is morphine and since most doctors are unwilling to offer that I am left with Flexeril and xanax. Both of which are not supposed to be taken long term. I have a large bag full of Rx’s that caused such significant side effects that I am unable to take them. I had to go off of my antidepressants because of the Paradoxical Reaction I was having. Couldn’t figure out why I would sit at my desk crying non stop, and all I could think about was ending my life. It was so scary and no amount of trying to rationalize with me made any difference. My counselor was aware of what i was going through and made sure I didn’t have a plan and he felt I wasn’t a high risk to actually do anything so we just talked about it. I finally found out why my meds were working backwards and was no longer willing to risk what continuing them might lead to. I don’t know where to turn. Neurontin…serious hallucinations and a full blown manic, can’t touch it or anything like it. Cymbalta, cardiac episode. Xanax, flexeril and a couple of beers also work backwards. I am wired and manic. I know, don’t mix such things with alcohol even if I have been lucky so far doesn’t mean something bad can’t happen.

      Anyhow what the hell do I do now? Is it more Fibro than the GBS? Any ideas? Any place I should be searching for info that I may not have found yet? after 7 years of researching, trying to find answers, I am now at a brick wall. I hurt. Please, anyone, someone has to have some information or personal experience.



    • GH
      February 16, 2013 at 11:26 pm

      “Fibromyalgia” is merely a catchall name used in the absence of a more specific diagnosis. If you can get to a Neuropath Center of Excellence, perhaps you could get a better diagnosis of your condition.