Quote:
Originally Posted by ermintrude
He has no idea what's going on at this point. I have a very strange case. It looks autoimmune-related but it isn't (my blood has lupus but
I don't), I have extensive small nerve fiber damage to my everything but better motor nerves than a normal person, and I have some very odd symptoms, like neuropathic water retention. I also have a host of other neurological conditions preventing me from taking anxiety meds, or pain meds. Sorry about your CMT, Susanne, and thank you both for the advice.
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Good motor nerves are a great sign! If yours isn't one of the hereditary neuropathies you have a good chance of improving. Motor skills are usually affected early, I was unable to run as a child. The advice on this forum for nutrition and supplements may help a lot. Good luck!
It is awful to have to deal with neuropathy as a young person. My sons are 26 and 28 and they are worried about how the progression will affect their ability to work in the future. I was a stay at home mom, so didn't have that pressure.
It is good advice to vent on here. We understand what you are going through. Unfortunately friends and even family can get tired of hearing about it and are not always empathetic. Of course when you really need help, you should be able to ask for it. My husband and I have completely switched some of our roles, since I need so much help.
Hope you have some news soon, but this can be a very tedious and indecipherable condition.