Progressing, need a little hope
 

Kind of a venting thing...all of my friends are actual young people and have no idea what to do with me right now. Besides, I don't know who else is tired of explaining what neuropathy is through a gale of random tears, but I sure am!

Basically, my condition is progressing at a pace sufficient to spur my indolent neurologist to order a very literal battery of testing, including a skin biopsy and enough blood work to shock the phlebotomist ("Are you serious right now, I gotta label all these tubes? You were here last week!") He's still not sure they're going to come up with anything treatable, not that I could be given the treatment for half of the insane things he's testing me for. Yes, Dr. Genius, I totally have a Finnish Heritage disease. Now I just have to tell my Italian family we've all been lied to! Why, great-grandma, why?

Basically, I can feel the pain moving up my limbs by the day. I am being consumed by fire, and I am super not into it. Anybody have any stories of hope or whatnot? What a disease, robbing you of the ability to both drink and dance your sorrows away...

If you are implying by the above that you have a hereditary neuropathy which doesn't seem to be in your family tree, well it happens.
It also happens that sometimes our family trees aren't what we think they are. My bio father, from whom I inherited this lovely CMT which is currently rendering my arms painful and practically useless was not my Mother's husband.
Do you or your doctor suspect a hereditary neuropathy? I have passed this down to two of my children, both of whom are symptomatic, one quite severely.
If it is hereditary you can drink in moderation because there isn't much you can do to it or for it. Please let us know a little more about what you and your doctor think is going on.
All the best, which would mean hope it isn't CMT!

Thanks for sharing. Try to limit venting with friends, do it here. Don't hesitate to have your doctor give you an anxiety medication during all this testing.

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.

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.

Fluid retention can come from gabapentin and Lyrica.

It also comes from eating too many sweets and carbs.

And there is also a condition, called hereditary angioedema (which I have) which will cause swelling. It can be acquired by using ACE inhibitor drugs for blood pressure. It is very sneaky and a fairly new diagnosis, and many doctors don't know about it.

http://www.haea.org/

Right now I have a swollen left hand...for no reason! (other than some trauma and minor surgery to my toe!).

There are special blood tests for this, described on that site.