I don't have pain (yet) either, just tingling, twitching, myoclonis, dry eyes. I used to have trigeminal neuralgia which was very painful but it hasn't flared in three years. As I am not diagnosed, I don't know what to expect in the future, I know I have sensory neuropathy with (I think) some demyelination, so a bit of a mix. I do wonder if one can continue like this over the long term or if one is destined to get worse over time. so far things are bad but I know they can get a lot worse!
Quote:
Originally Posted by diagnonsense
Ok.
Soo, I had noticed that a lot of people on here are talking about pain. And they are on medications for their neuropathies for it, etc.
(Neurontin, Topamax)
Now, I have been trying to figure out if there is some certain type of neuropathy that is more apt to be more painful, thus causing the need for these meds?
Cause I have a neuropathy.. and thank the lord, I am not in pain. (which is why I am curious)
Another thing..
I was reading something about small and large fiber neuropathies. And testing.
It appears to me that persons with small fiber often get "stuck" with idopathic as a diagnosis unless they figure out that they have diabetes or something.
Since I had an abnormal EMG/NCV does that mean that I have a large fiber abnormality?
I am honestly terrified that I will go home from Mayo with an "idiopathic" diagnosis.. I don't think I could handle that.
Its hard enough that I have poor functioning of my body and my Dr.'s won't treat me for anything, cause they don't know whats wrong, and I had to wait MONTHS to get into Mayo.
If I have to go on like this.. .. I just can't do it. 
Well, thats only 2 questions I guess.
Oh, and why doesn't anyone use the chatroom? |