Hi! I am new to the forum and actually posted in the new member section. I was diagnosed with a Sensory/Motor Nerve Neuropathy with also some muscle changes and this started in 1993. It comes and goes with some mild attacks along with some major attacks.
I swear up and down I have MS and there are some white matter lessions on the brain but not in the typical areas for MS. My last EMG they did on me showed a Chronic Demylinating Axonal Polyneuropathy in a severe state.
I get spells of numbness and tingling that drives me nuts! Sometimes when the attacks are bad it makes me dizzy and sick feeling. Fatigue along with it! My eye acts up and goes blurry too off and on.
I have shown some positive ANA's, Anti DsDNA, a C-4 which was low. High white blood counts and few other things but nobody seems to give me any answers as to why I am so darn sick! I get nerve pain something aweful along with joint pain. Lets just say I stay in pain just about 24/7!
They have tried me on Elavil and I got sick, Nortriptiline and that was nothing and did nothing. Tegretol made it worse. I have been on Neurontin and that makes me woozy the next day making me want to do nothing but sleep and feel funny in my head. Zanax .25 is too low in RX and they won't up the dose. Clonipin at bedtime for sleep 1 mg. That seems to help but am only allowed that at bedtime. Most of the doctors I have seen don't want me on the addictive drugs and keep mentioning anti-depressants. They want me to try Cymbalta. Okay! Tried it and was up two days and am now scared to death of it! Any of you take a certain drug that is non addictive but helps stop numbness and tingling without getting bad side effects. These new drugs they are coming out with scare me to death. One doctor placed me on Ultram ER and I thought I was going to die! Alot of doctors now don't want their patients on addictive drugs so what is out there that helps neuropathy that I can use. Tired of being sick and tired and wished they had a good drug that worked.

Hi Nummycat,

I too have been swearing I have MS. I'm still waiting on the final results of my NCV which I already know is abnormal but I still don't know what it means. My doc tried me on Elavil as well. Made me sick too. He has not tried anything else since. I'm starting to get the nerve pain along with the numbness. I feel it throughout my body. Feels like I'm getting shocks here there and everywhere. I also get the burning sensation mostly in my toes.

Fatigue, blurry eyes...yep and yep. I also suffer from vertigo and until rece ntly what felt like earthquakes in my head. Felt like my brain was shaking inside the skull. After 15 months that finally stopped. Hope it stays gone.

I have muscle/nerve twitching throught my body as well as some doozy mucle spasms.

Just wanted to let you know you are not alone!

Hi Nummycat and lnxgal!

welcome to both of you!

I am very tired and cannot say much just now, but I did want to welcome you both!

I will quickly add that I do understand why docs do not want their patients on addictive meds; however, if these are the only meds that truly make life tolerable to the patient...then they should have the right to some relief!

I have gone through all of the "alternatives" and suffered so badly while doing so!

I was so upset when I was finally relatively relieved from some pain with the analgesics...as I had suffered so long trying out anything but the "addcitive meds!" I do not understand the length of time some docs allow their patients to needlessly suffer! I am sorry if this has been your experience! I hope you ocan find relief soon!

I dug this out of the sticky link. It's the nutritional and pharmacutical drugs to help neuropathy. I made a very long car trip today and I just hope this comes thru. If you haven't read the stickies, please do so. It's the best thing you can do to help yourself. http://neurotalk.psychcentral.com/post4797-13.html

Billye

Are we having fun yet?
Silverlady's reference is important...It pretty much covers the majority of the meds many have tried and use. Sounds like both your docs are super cautious about prescribing possible meds that can help you! Actually, ULTRA cautious? To the point of NOT prescribing non seizure meds such as Neurontin, Lyrica, Topamax and the dozens of others most usefulmeds for such issues..... Have either of your docs tried any of the Anti-Epleptic Drugs [AED's] for you at all?
I'm not sure where either of you live, but surely there are docs you can go to [after you get copies of your prior tests etc] and get a second, third and whatever it takes opinion to get treated properly! There are enough of us on the boards from all over who mite, just mite know of a 'good guy/gal' not too far away? Or one who can get things rolling on the best treatment path for each of you.
I for one have found that at times, the pain meds such as Tramadol can take the 'edge' off, but not much else and that nothing really helps long term for me but to take my mind off of it or sleep. Ironically aside from my first few months w/CIDP, I can and DO sleep! Tho not as well as 'before'...I dream rarely, and dream-mode is something I wish I could have more than once a week.
For CIDP? Here is a site I've posted up in the 'stickies' and I suggest that you explore the whole thing!
http://www.cidpinfo.com/ Just click on the blue part and you'll get a new screen...
It talks about diagnosis and the standards for diagnosing... Any doc that says 'Can't trust the Internet' doesn't realize that this site is really put out for THE DOCS! It is a respected international PROFESSIONAL site, and a doc who nixes it, well? I can think of a 'few or more' words! I won't print them tho.....
I encourage you both to read the 'stickies' - the middle link at the top of this forum and also to go back and read lots of prior posts. You mite just find answers to questions that have been buzzing in your mind for ages, never know...?
Hope this helps... - j
Love your names by the way!

Hi Dahlek,

The last neuro I saw offered ativan for the"myokymia" he said he thought I had. I opted not to take it because...

1. I thought I would have to take it frequently because the twitching is daily (this was in February) *sigh* now it never goes away. It's every day all day long. I've read that it is addictive.

2. I was a little skeptical of his diagnosis of myokymia especially when there was no twitching going on when I saw him (isn't that always the way) and when he didn't order any testing to confirm what was going on. The recent NCV I had done my GP ordered at my urging.