Greetings
 

I was diagnosed with anti-MAG peripheral neuropathy about 7 years ago with symptoms of numbness of my finger tips and toes and problems with balance and coordination. The first neurologist I went to was unable to diagnose me despite abnormal blood work. After 6 months of testing and a sural nerve biopsy, I was sent to a neurologist at the U. of Iowa Hospitals and was immediately diagnosed and started on IVIg infusions. These treatments were helpful initially, but for the last year the improvements have decreased. I moved to another state and am being treated by a neurologist who has never provided care for anyone with this condition. I don't generally have neuropathic pain, but suffer from burning of my hands and feet (especially when I get warm), balance problems (sometimes I fall or bump into things), weakness of my legs, fine motor problems with my hands, fatigue, intermittent mildly elevated temperature and occasional increases in blood pressure. I am taking neurontin at night and requip for restless leg syndrome. I find that I cannot be on my feet for long periods of time. My feet become too uncomfortable and numb. Anyone else with this condition?

Hi Nancy:

Just wanted to welcome you to NeuroTalks.

I know others will pop in and give you their words of wisdom. Many people here have PN for a variety of reasons. I have diabetic PN and my husband has CIDP and has been doing the IVIG thing now for over 1 year. Helped with his balance but not the pain.

So you take care.

Melody

Hi welcome to the board. I have pn and it is similar to rsd and hard for me to be on my legs. I have severe lower leg pain though. I also have something similar to fibromyalga and was wondering if you had that too?I am clueless on dx but have to so many docs and the fatigue popped out to me. You said your neuro has not dealt with your issue is their someone you could find that has more experience?Have you been tested for diabetes?Well welcome to our family.

Thanks!
 

Hi Melody,
Sorry about your diabetic PN and your husband's CIDP. I can only be thankfull that pain doesn't seem to be a big factor in anti-MAG neuropathy. I hope your husband continues to do well on IVIg. It's expensive, but fairly side-effect free. The best to you both!:)

Thanks!
 

Thanks Daniella,
I found that I needed to go to a large research-oriented medical facility in order to get a diagnosis. The docs there seem to have seen more unusual conditions and are more interested in looking into conditions for carefully. The neurologist I started with did all the right tests, but didn't know how to interpret the results, even when they were grossly abnormal. Anti-MAG neuropathy is very slowly progressive, so sometimes treatment isn't recommended, because of the side effects and expenses. I do keep an eye on research that is being done. Rituxan has been studied for anti-MAG neuropathy, but still isn't covered by insurance. Just need to wait.

No, I don't have fibromyalgia or diabetes. I'm sorry that you have so much pain. That must be quite difficult, especially without a diagnosis.:( I hope that you can find the right doctor to diagnose your condition appropriately. Keep looking!
NancyKay

Hi I'm Sue,
And yes to all you listed,moving makes it hard. Sounds like you had
very good Drs. how far are you from a better Dr. If you say there are
some here that might be able to help..Did you get put on any new
meds. Well wlcome to Neurotalk there are some amazing people here.
They will be by..hurts when you bang into the walls and such,please
be carefull...Sue

Thanks Sue!
Seattle is probably the closest large city (about 80 miles away). I was changed from sinemet to requip (for restless leg syndrome). I hope I will hear from someone else with the same condition.
NancyKay

A few questions NancyKay!

• How long did it take you to get diagnosed with anti-MAG PN?
• What symptoms were evident at the time of your first consulting with a neurologist?
• Have the symptoms stayed the same or progressed?
• What were the actual tests which diagnosed anti-MAG?

Looking forward to your responses!

Hello NancyKay,

I do not have what you have, but I have small fiber neuropathy caused by diabetes.. I was diagnosed with diabetes over 10 years ago and did not listen to my doctor, so I pretty much ate what I wanted and did what I wanted. Fast foward 10 years later and I have been diagnosed with PN. Of course now I have my sugars under control..... better late than ever I suppose. I have only had this horrible disease for about 6 months now, but let me tell you it's been hell for me and for my family.
I take 6, 300mg of Neurontin, 3, 200mg of tegratol. I have never taken this much medicine before in all my life and I am about to turn 41 in a few weeks.
My son is only 5 and I fear that this disease will consume me and I won't be able to have a normal family life with him or my husband. Anyways enough of me........ anytine you want to talk, just come on aboard. I have been here for less than a week and their are some wonderful people out here.

Take care,
Michele

Nancy Kay, please check out this part
 

of a very useful website we all refer to here often:
http://neuromuscular.wustl.edu/antib...imdem.html#mag
It is pretty specific about IVIG for anti-MAG. I'm sorry that you have this all. I've CIDP and have been receiving IVIG for almost 4 years. It is precious and crucial stuff for me. I couldn't function well without it, really.
In a way I was lucky that I 'skipped' trying prednisone or other similar meds due to other medical conditions. I also admit I have been fortunate in that I've only had two reactions to infusing. One minor side effect, and one not so good. But two in four years isn't bad at all!
I have heard of folks on Rituxan and Immuran for immune neuropathies, many are in trials...and my insurance [like yours] still is considering it 'experimental'. Some folks it seems are able to get assistance thru the drug manufacturers to have access. I can find the resources if you PM me or ask here.
Honestly, only this month there was a 'clinical trial' finished regarding the use of IVIG for CIDP. And it's been used for it for over 20 years and still not approved by the FDA as it's now considered an on label-use! It should be soon tho, I truly hope and pray.
I know that there are others here using IVIG, besides Melody's Alan. Kmeb is one when she can tolerate it. And there are others who peek in now and then.
Here is hoping that it KEEPS WORKING for you! - j

Hi Megan,
It took about 6 months from my first doctor's visit until I was diagnosed. That isn't really so long, except that the diagnosis could have been made in just a month if the neurologist had been able to interpret my grossly abnormal blood tests (which he had ordered). The symptoms that I had were numbness of my fingertips and toes, burning of my feet and hands (when I get warm) and balance problems and occasional falls when going down stairs or slopes. The diagnostic tests included nerve conduction studies (rather painful), and a blood test (sensorimotor Athena neuropathy screen) which was diagnostic for elevations in MAG (myelin associated glycoprotein), anti-MAG antibodies, & SGPT. These blood tests were expensive, but well worth it. My treatments helped initially to slow the progression of symptoms, but my symptoms are progressing now, slowly.
Thanks for asking, Megan.
Best wishes,
NancyKay