Greetings
 

I was diagnosed with an autoimmune peripheral neuropathy called anti-MAG neuropathy about 7 years ago when I was only 45. It took quite a while to get the right diagnosis as it is somewhat rare. I finally found a neurologist in Iowa City (U. of Iowa Hospitals) who had provided care for about 6 patients with this condition. My symptoms were numbness in my fingertips, toes and loss of balance and fine motor control. The worst symptom has been the burning of my hands and feet that gets really bad when I get warm. I thought I might have a vitamin B12 deficiency. After lots of testing and blood work, the diagnosis was made and my treatments started. I got IVIg infusions that seemed to help with symptom improvement initially. I have moved to a cooler climate which has helped my burning symptoms. The neurologist I go to now has never provided care for someone with my condition. I take neurontin and requip at night and cymbalta in the morning for symptom relief. Anyone else out their with this condition? I'd love to hear from you.:)

Hi NancyKay,

I don't have your particular disease, but I also have a rare autoimmune disorder affecting the nervous system. Mine took 8 years to diagnose, which was very humiliating. I have something called Hashimoto's Encephalopathy, a rare complication of autoimmune thyroiditis.

I'm glad you got your diagnosis and are on the way to healing. Hopefully someone with anti-MAG neuropathy will post soon!

Best Wishes!

Welcome Nancy Kay!
 

I'm sorry I havn't gotten back to you sooner....
I have CIDP an auto-immune form of peripheral neuropathy as well. Tho I'm not Anti-Mag. We have 'relative' conditions.

Here are a few web sites that should help you understand things.
This discusses how doctors should test progressively about neuropathies"
http://www.aafp.org/afp/980215ap/poncelet.html

This is technical, but you will find that there are so many different 'immune' neuropathies that even neuro's well versed in this area can't possibly know them all:
http://neuromuscular.wustl.edu/antib...imdem.html#mag
Also a list of diagnostic testing:
http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab

Lastly a web site put together by some folks on the PN forums here can help you keep track of the tests you have, and maybe should have:
http://www.lizajane.org/

The Peripheral Neuropathy forums are here:
http://neurotalk.psychcentral.com/forum20.html
At the top of the forum are things called 'Important links/stickies' Take a look at many of the sites referenced there, they may help.

One thing I think you MUST get is a copy of your medical records from Iowa!
It may cost you a fee, but that you had been receiving IVIG and are not now is bothersome. I know as I receive it monthly and have for 4 years. Your new neuro must see these records [a copy only! Keep those originals for the future]. IF he shows no interest in really treating you, well, it's time to get another opinion! It took me a year and 3 neuros to get my diagnosis, so please keep at it!

Don't hesitate to ask questions! There are lots of very good and helpful folks here! :hug:'s - j

I was wondering, did either of you guys have a gamma globulin spike in your serum?
There's an undiagnosed person at another site that I'm trying to help and he has polyneuropathy-type symptoms and increased levels of IgG in his blood...

Thanks!

I'm not sure about
 

Gamma-glob. spikes I do know I went thru almost ALL of the WHOLE immune testing panels? Some tests went to Mayo, some to Athena Labs and some who knows where? I do know that I was tested for the various IGg [and other sub-g letters] for various tolerances regarding possible IVIG therapy. And I got by? I'd have to dig thru piles of records and tests to see if I had a 'spike' or not.
Key diagnostics for me were the nerve conduction studies [showing conduction deteriorations], blood tests showing hi inflammatory responses in lots of quarters [not much I understand specifically] and Definite inflammation markers in the spinal fluids.
So, you mite say that the sites I keep posting regarding diagnosis are key to helping US the patients learn about what SHOULD be done, as opposed to what ever so many docs do or don't.
HEperson? I too have Hashimotos'. I was hypothyroid a long time before I got my CIDP diagnosis. That the one could have caused the other is open to debate. Or even that a diagnosis of BCancer in-between had anything to play in it all is also debatable. My Hashi's was diagnosed this time last year [4 years after the CIDP onset]. But I had had a 'flare up' of the hypothyroid about 5 months after my neuropathy onset. Many, many folks here will attest to the fact that IF you are diagnosed w/one immune disease, others are likely to follow. I'd known/suspected the thyroid aspect from the get go, and was told it wasn't a problem. {?}
Having Hashi's is far, far easier to treat than say, CIDP. And cheaper med-wise. I truly hope and pray that you don't get more of these worser things! Bad enough w/the thyroid! Worse w/other complications...then there is the med for one interfering w/the med for other issue...issues! IF they are connected, and they may well be? The thing is that key tests werent done for the other 'possibilities' at the key times they could have been useful.
Of course, this doesn't make you FEEL any better! Just know you are in one stubborn and smart club! ?? Hugs - j

My name is Melissa and I am 28 years old. I have been diagnosed with a sensory inflamatory neuropathy, with symptoms of CIDP. I have been suffering for over a year now, it started with tingling in my hands and feet. My GP told me it was all in my head, within a month my feet were numb and up to my calves. I finally found a good neurologist, but by this time it had travelled up to above my knees and into my hands and arms. My balance was off do much that I couldn't have a shower without falling. I couldn't wear jeans because I couldn't do up the zippers. The elastics for my hair hurt my hands and I couldn't do my hair anymore so off she came. I couldn't print or use the computer, and the doc was talking about taking my drivers license away. After many test and much pain I was put on Gabapentin( sorry if I spelled wrong). I was taking up to 4200 mg a day to help me get by. After six months of this my wonderful new neurologist put me on the IVIG treatment. I go 5 days a month every mont, and wow! I can walk again, I can put on my own jeans again. I can go on this web site and post! Is there anyone else out there who is my age, female and has these same symptoms? The doc doesn't knwo why this happened to me, he is very curious . One thought was a vitamin B6 overload, one other was a B deficiency. But who knows. They did blood work before the treatment to send to the mayo clinic along with my nerve sample, but they lost the blood, so I guess they will never know why. Hopefully the IVIG will continue to help, I've been on it for 5 months now. Sorry so long. Talk soon!

Welcome MessyMel to NeuroTalk! Glad you found our forum. I am going to copy your intro to our New Member Intro Forum so more people will get to know you!