Thanks en bloc

I don't have a previously know AI condition - My dr leans towards some hereditary autoimmune neuropathy, but cannot be sure as I do not know my paternal biological background. He really has not been as pushy as I would like towards finding a source. I agree with you and would like to push further - but in reality what could it do for me? I already have ganglioneuritis and am not likely to recover, is there anything to be done different? According to him no. What do your dr.'s say?

Yes my Neuro dr. is at a teaching hospital and any other dr there that I have seen has been very, very respectful towards him and indicates that he holds a very high position in the hospital. My neuro himself has told me he specializes in the ganglioneuritis cases and has a number of them. In regards to the statement that it goes away; he said that most people never even realize what they have because it is there and gone in 6 months. Whereas with the cases like you and I, if you have as long as this, it is here to stay and there is nothing you can do about it. I just have a hard time accepting this. It has ruined my life, marriage, career potential, my future, my children’s lives, at times I just don't even know why i am alive. I cannot function any more than a verbal feedback unit. Which is important, I do understand - but I even feel guilty touching my kids as my hands are always ice cold and they always shiver when I touch them and I feel so creepy then. I know I have to stop the self pity - but it doesn't feel like self pity - it just feels like reality.

I have had so many tests done; multiple mri’s, one spinal, many, many blood tests. I would like to get a skin biopsy - but why? It would just be proof, not really a solution or a corrective agent. My mri’s were clear, as was the spinal. The blood work always show elevated inflammation but nothing indicating specific marker’s that the rheumatologist or allergy dr’s want to work with. But all of those visits were before I met up with this site. I am going to ask for those records and see what the levels were and what was tested for specifically. Then maybe I can understand and get somewhere with the neuro - I don’t know. I also feel like they test me at the wrong times. They test me for allergies when I don’t have any allergy symptoms. I have had a nerve conduction study done twice - which showed nothing. But I knew that going in. My nuero said my neuropathy won’t show up on a nerve conduction study. It still rankled like heck when the “pompous - ask” of a nerve conduction dr kept “nope - nothing wrong here, no, no neuropathy here, everything fine here, blah, blah, blah”. It most annoying. I am going to use the Liza Jane chart - thank you so very much for that referral!

Where is your ganglio at? (trust me - I can empathize with low cognitive function and memory recall! - I don't remember where yours is placed!) I am curious how yours effects you, what symptoms you have, what treatments you use, ect. thanks