[Monica de Lara]

It's me again.

By reading posts of new people here, I realized that i haven't donde what i should have done and i haven't learned what i should've learned.

I realize too that my neuropathy, now i am even wondering if ti s neuropathy or not, is very different from everyone's else here. I am going to five a brief description on my PN evolution. Perhaps you could help me understand what is really going on in my body, because i realize now that i was never given an accurate diagnosis. Doctors said i dind't really need a name because the treatment was the same

My neuropathy started almost three years ago, at that time i had a personal problem that led me to a HUGE amount of stress, i was also taking some antibiotics for acne (tetracycline), birth control pills and a doctor prescribed a acyclovir for me because he thought i had herpes, but i never had it. That's when my problem started. First it was a mild sensation, like a bit burning, i don't know how to describe it, around my pubis and groins, the sensation would move from there to my thigs and then back. I realized it most when i was sitting and trying to sleep. The day it was imposible for me to get to sleep because the "sensation" became so annoying, i decided to visit a neurologist. He prescribed clonazepam but the "sensation" wouldn't dissapear, so then he ordered some tests. I turned out to be hyothyroid. I started taking a medicine that contains T3 and T4. But nothing changed. Three months after i had started taking t4 and t3 the sensation was still there and it had expanded to my calves and feet. It is interesting for me that my neuropathy or whatever it is, started in my thighs and not in my feet as most of yours has.

Eversince my problems have been: pins and needles, cramps, tingling, feeling spiders wolking in my legs, feeling worms in my legs, bubbles, feeling wet when i am not (all odd sensations) and that's all. That's all it's been, i walk perfectly, my balance is normal, i don't have any motor issues, my reflexes are normal, i can walk on my ankles and on my toes... everything motor wise is ok. Those weir sensations are only present in my legs, i OCCASIONALLy get them in my hands, and they are not that painful. I mean they are just weird and irritating. Every month when i get my period i get horrible cramps, i can say that IS pain, not what i have in legs, what i have in my legs is just weird, odd, desperating, constant, and makes me often be in a bad mood, unable to concentrate, unable to read, unable to pay attention to what other people are saying, because i am thinking about my feelings in my legs. Also i have become extremely aware of my legs and i can’t help being paying attention to them ALL the time.
All this lead me to wonder the following:
• Do i really have neuropathy, and if so, why can i walk, run, stand on my toes etc or is this just a simpler problem which i have not received accurate treatment for?
Some tests i got were:
• ANA’s (normal)
• Antiganglioside antibodies (elevated)
• EMG and NCT (not normal, a Little neuropathy)
• B 1 and b6 vitamins (normal)
• Vitamin D (nearly below limit)
• Electrolites (normal)
I got more but i don’t remember them. I was diagnosed with an autoimmune neuropathy, don't know what type. I took corticoids for 6 months withouth any result (except for weight gain and more acne), and then i had IVIG twice. I don’t know what led the doctor to decide i would only need it twice, but i was thankful because it was extremely expensive. Another doctor i visited said I never had autoinmune issues and that giving me corcicoids was unnecessary. I still don’t know what exactly i had or have. About a year ago i got an EMG and it can back normal, so i guess that means that my nerves have healed. I am currently only on Lyrica, elavil and T4 and t3 for the thyroid, and i long list of supplements too.
So basically my questions are:
• Should i go to another doc and spend a fortune just to get a name for my neuropathy but the same treatment? Does that make a difference?
• I just got an inssurance, but will it cover any studies. The agent told me it wouldn’t cover any treatment of the sickness i had before, so i guess that includes the studies, doesn’t it?
• What are some really important studies i should get, but the really important ones because i cannot spend a lot of money on them?
I know this sounds like i haven’t paid much attention to my sickness. The truth is that i have. But my education is not related to science (i got a major in Political Science and IR) and i work and i haven’t given myself the time to understand all i have to understand.
Is this a tremendous mistake?? Or should i dismiss the name, avoid spending a fortune, that would basically mean for me spending all my savings (which are not enormous by the way), use that Money for something that would make me happy (as taking a trip) and keep taking my drugs and supplements?

Thank you for reading me