Anti-MAG neuropathy
 

I've been diagnosed with anti MAG neuropathy, an auto-immune variant with no known effective treatments. I never hear anyone else claim to have this seemingly uncommon type and very little is written specifically about it in the usual books. (Latov, Sennett, etc.). Luckily it is described as "very little progression over many years." Does anyone out there have any experience with this and is able to tell me what "little progression" has meant for them over many years? I've had it almost three years now (diagnosis just a few months ago at age 59) and so far, it's disturbing but bearable. I have burning, tingling and numbness in my feet but no weakness yet, no balance problems, and no shooting type pains. I've cut down on walking and standing but can bike as well as ever and can still walk 9 holes by taking it easy and recovering the next day. I read about so many other really disabling types of neuropathy that I wonder if that's in my future too. Any other anti-MAG folks out there?

Granacki,

Hello and welcome to NeuroTalk. You will find a great number of people here to share comfort and assistance. Looking forward to seeing you around.

Darlene:hug:

Welcome to NeuroTalk Granacki...I'm not familiar with your dx but here is the link to our PN forum....perhaps someone there with have more info for you.

http://neurotalk.psychcentral.com/forumdisplay.php?f=20

Hi, Granacki! :Wave-Hello:

Welcome to NeuroTalk!

I've never heard of your condition either, but if you follow the link provided by Alffe, you may find some folks who know about it. Do let us know if we can help you with anything.:)

Hello Granacki,

I, too, have been diagnosed with anti mag neuropathy. It started in my mid fifties with a slight tingling of my feet and gradually progressed to the burning, tingling, numbness point. I am now 64 and have experienced significant loss of muscle mass in both calves. I do not have any significant pain but have experienced tremors in both hands but little or no numbness. Balance and muscle weakness are my biggest problems and I must be very careful not trip over even the smallest obstacle.

In 2007, I started 10 months of plasma pheresis(two days a month on successive days) and chemotherapy (after the second day of plasma pheresis). The drug was Cyclophosphamide and it did cause 2 or 3 days of feeling poorly (each month).

My physician, Dr. Ravits at Virginia Mason in Seattle, indicated that my protein levels after the treatment were within the normal range. However, I cannot tell if there has been any change in my condition. I doubt that it improved and if it has deteriorated, it is probably minimally.

I was very active in sports prior to this problem and have pretty much given up every sporting activity. I do plan on getting back to golf this summer and hope I can walk rather than ride a cart.

Let me know how things are going for you.

Jim Perkins

Hi, and welcome to NT

I do not know the dx you're suffering from. I'm so sorry you have this to deal with.

Looks like you've found a buddy already. It helps just to know someone else understands what you're going through because they've been there.

This is a wonderful place for healing and friendship.

See you two around the board...

anti mag neuropathy:
 

My husband was diagnosed in 2009 at age 55. His symptoms began in 2006 with numbness in his toes and, like yours, has now progressed to numbness and muscle atrophy in his feet and calves. Balance, weakness, and tripping are also his biggest problems. Since June, 2010, he has developed drop foot in both feet and is wearing orthotics on both legs. We recently saw a new specialist at Barnes Jewish Hospital in St. Louis who strongly recommends rituxan therapy. He said it most likely will not reverse the symptoms but should stop the progression. At this point Blue Cross is unwilling to pay for the treatment. We are concerned about the side effects of the treatments, but he would like to stop or slow the progression.

I was so thankful to see your letter. We don't know anyone with this illness. I was happy to read that the treatment you had has stopped your progression. Are you continuing to have the chemotheraphy treatments? Are you familiar with rituxan? We would appreciate hearing from you and hope you are continuing to do well.

Jill Tucker (aka wyngaerde)

Hello, Jill. I have posted here a few times but not since I had the Rituxan treatments in September, 2010. My dr. at OSHU has told me that nerves DO HAVE THE ABILITY TO REGENERATE especially those which were most recently attacked. (I experienced improvement last year when I was given plasma pherisis treatments.) At the very least, the Rituxan has halted further nerve injury in many cases. So I am waiting to see and hoping for the best.

Try contacting the Rituxan manufacturer - they have a program to provide the drug if you qualify.

Hope you will post further news of your husband's situation.

Regards, Nancy W.

Nancy

I have been trying to contact you on the other anti-mag post.... I will start Rituximab in Jan... I wanted to see if you see any improvement yet after completing the Rituximab treatments.

Bob

Anti Mag Neuropathy & Rituxan
 

Dear Nancy,
How are you doing?
I was just dx with anti mag neuropathy and the doctors all want to start me on Rituxan. They did not even discuss plasma phersis. Have you seen any improvement?

Hello and Welcome!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

I am being tested for MAG and as I read your symptoms we sound alike. I have had these symptoms for 5 years and when it began to get worse on my left with shooting pains in the toe that seems to be dropping? I know transparency is good but I think I may have directed the Doc to the wrong one. I told him I was a binge drinker for many years and also some recreational drug use in my youth. 2 months ago I had MRI and CT scans which show a worthless L5-S1 which was not a shock as bothered me since HS. Last week when I reported the toe and left leg getting worse he ordered all the test which includes the MAG. I went online and found you and am a little freaked out. I am 53 and very active and still was able to walk 2 miles 3 times this week and lift weights for an hour so who knows. That shooting pain is really sharp but last a little over a second. Told my wife I might as well start drinking again! Kidding of course but I am glad I found you and will certainly keep you posted and hope you so the same. I have a challenge ahead and need to be healthy as mu Dad has Alzheimer's and counts on me....Trying not to panic.....

England
 

Hello, I have anti mag neuropathy and my consultant is suggesting rituximab but I have been concerned about the possible side effects can you tell me how it has affected you? Colin.

Rituximab
 

Colin
I am 73 with a 15 year history of Monoclonel Gamopathy. Anti-mag was diagnosed about 10 years ago. I originally took IVIG without much success back in 2000. About a year ago my balance got worse and I decided to seek help again. Hematology and Neurology at the Mayo clinic recommended Rituximab. I spent about a year trying to find a way to get the drug and to research the effects. It was described by my local oncologist as a "mild" chemo. I think that is reasonable definition as far as tolerating the RX.

I completed the standard protocol of 4 weekly infusions on Feb 7. Two days later I scraped my shin with an air-conditioner metal filter. I spent the next 4 weeks trying to get rid of the infection. Since the immune system is compromised you need to be cautious about treating skin abrasions and other infectious sources. The immune system is compromised for about 10 months. It has been 6 weeks and I have not had any other colds or viruses even though I have been exposed to those. The infusions were a piece of cake... just hives on the first infusion... they stopped and gave me 2 vials of steroids and it cleared up. The infusion was resumed in 30 minutes with no further problems. The infusion nurses gave me two Benedryls and steroid vial by IV prior to each infusions.

I should have tried to quanify the PN prior to taking the Rituximab. I have lived with the disease for so long I forget all of the symptoms plus the symptoms vary from day to day. For example.. do you feel cold tile under your feet? Or can you stand on one foot? Can you close your eyes and stand on both feet without falling over? Try and quantify some of these symptoms so that after you take the Rituximab you can try and detect improvement. I think I have improvement but it may be wishful thinking. I have appointments with Mayo Hematology and Neurology in late April and I will see what they have to say. Maybe they will check some nerve conductions. One more thing before taking the Rituximab see if you can get an abbreviated nerve conduction tests as a baseline. A few on the feet, legs, and hands. At some point you will want to know if there is any nerve regeneration or further degrading of the nerves.

In summary..... the Rituximab was well tolerated just be careful of your compromised immune system, particularly with staph infections. I didnt know the skin has lots of staph all over it. Keep peroxide around and wash and flush all abrasions immediately. Something stronger than Hydrogen Peroxide would be good to have around.

Good luck
Bob

Post-Rituximab report
 

Good morning, Edelstep.

Very happy to report noticeable improvement in many -- but small -- ways. My feet are getting more messages now about balancing and when they feel something I might trip over. I'm also able to pump with just the ball of my foot on the exercise bike -- I didn't have the strength to do this before. So I'm very thankful for the Rituxan and looking forward to more improvement. How are you doing?

Regards, Nancy

Rituxan treatment
 

Hi Anti-MAG sufferers,
I am wondering how some are able to get Rituxan treatment? Does your insurance cover it? Were you able to get into a research study? Did you contact the manufacturer? I have Aetna insurance and Rituxan is listed as an experimental drug for this condition - and thus, isn't covered. Any suggestions?
Thanks,
NancyKay

How is anti-mag diagnosed?
 

I have posted several times before on the pn site, but have not here. Its amazing the similarities I share with a lot of you. Began with numbness in one toe in late fifties and has spread now to bottom of calves over a 7 year period. Primarily sensory and wasting in feet. Occassional shooting pains. Have done seated calf raises with weights ever since this began. Have a lot of strength in my ankles as a result. I have also done work on a round balance board. My theory was to teach my brain to respond to pressure feedback as opposed to sensory. Using the Wii game with the balance board has also been a great training tool especially the downhill skiing I have had extensive workups and ,I thought, every test possible. Diag. of course was idiopathic pn. I went back over my labs after reading these posts and could not find any anti-mag testing. I did have a lumbar punc. that showed protein levels of 59%. Had IVIG early on without relief. Also tried low dose prednisone. What exactly is anti-mag neuropathy and what tests are needed.

Welcome, & good for you!
 

I'm guessing you might have done better to introduce yourself with a new thread here rather than hitch a ride at the end of an old one...but I've only been here a few weeks, so what do I know?

I'm fascinated with the physical rehab you've developed for yourself, esp using the Wii. I've been doing the same sort of thing trying to counteract the side effects of statin drugs & weakening/deteriorating muscles over the past decade.

You're already on the PN forum, & thats good. Your post makes me think that some of our methods may be the same although we're dealing with different conditions. Too bad the computer doesn't have greater insight to crossmatch things like this.

The best to you. Keep that sharp brain at work!

Thanks for the suggestion. I just seem to stumble around the forum, not always sure where I am going to end up .

There's a Forum Jump at the lower right of most pages. That list pretty much all the places to go. The colored bar across the top has tabs that link to many places, e.g. Your Control Panel, Quick Links, etc.

But, yes. It's pretty easy to get lost on the database, no matter how we try to make doors available. I hope you'll keep asking questions & coming back. I hope too that you will share all that great stuff you discover! Please. Wii:Dancing-Chilli:exercizin'!

Hi all,
This is my first post on here, I was wandering if there are any uk members. I will tell my story tomorrow when I have more time.
From Martin

Hello, Martin. Welcome.
 

Ive met many members from the UK in one place or another around here. I'm fairly new at NT myself, though, & don't know any way to track down the Brits other than just thru synchronicity & chance. I'll try to check that out before you come back:wink:.

Don't forget to come back!:rolleyes:

anti-mag suffer from the uk
 

Hi everyone,

I am so glad I have found this website as I feel like the only one suffering from this disease.

I was diagnosed about a year ago. I was treated with IvIg but became allergic to it and my hands started to peel, with treatment they got better but not back to normal. Six weeks later I had plasma exchange which was a five day course and felt 75% better but again this didn't last for long, approximately eight weeks.

I have since deteriorated and have very sore fingertips and toes and very poor walking ability and balance. I went to see my consultant and asked him to explain in layman terms what was happening and he printed off a page from Wikipedia :eek: and just said I will give you more information when you come into hospital. I am waiting for the phone to ring to say to come in and have Rituximab.

I will keep you up-dated .Thanks for listening
Martin

What would some docs do today without the Internet?
 

:eek:Wikipedia?:eek: Are you serious?:eek::mad:

Well, yeah, I believe it. I have a possible parathyroid prob & as I began to ask questions doc shakes his head as he leans in toward me, arms crossing & palms open, facing me. When I stopped talking in disbelief :shocked:, he scribbled something on a scrap of paper, tossed it at me, & directed me to, "google that!" as the exited, doorway left.

I checked up on locating other Brits on the board & it's not set up for that. How bout go on one of the larger forums, e.g. MS, or the social forum, & just inquire? I think the word would get out that there was a Brit looking for countrymen.

Hello and Welcome to NeuroTalk!!
 

martinbrace,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

Fellow UK igm neuropathy sufferer
 

Hi Martin

Big John here from Hampshire UK. How are you getting along?

My consultant hails from Southampton General hospital a Dr Haider Katifi. This is where the Souths "center of excellence" is - allegedly - and it is where I have received two ivig infusions, strangely a year apart. I benefit from these for nearly 3 months then drop back to slightly below where I was before. Southampton do not seem to go for plasma exchange. They think that the next treatment for me should be Rituximab plus Cyclophosphamide as if treating for Lymphoma (which I do not have). Not sure about that having read the side effects but that is where I am today and still working part time even if I cannot walk a straight line in the dark and have to be careful when I close my eyes in the shower that I do not fall over.

I have an appointment to see the Hematologist tomorrow! last time he mentioned another bone marrow sample and a scan neither of which has happened yet.

Best wishes for your treatment,
Big John

Great to meet you!!
 

Big John,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, you will see we are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

Rituximab
 

Hi John,
Sorry to say this but it`s nice to meet another sufferer from the U.K, As I was wondering if I was the only one suffering with this problem.

Since my last post I have had another plasma exchange and again it lasted 8 weeks or so. I can walk about 3 steps before falling down so I use a wheelchair or zimmer frame. My consultant is a Mr Munro but one of his registrars a Dr Alex Faulkes has been my main man. He applied to the PCT for funding for rituximab but is was turned down due to the disease not being rare enough.He totally disagreed with their decision and appealed. This time we was approved and I am just waiting for a telephone call to say come in to hospital.
I have just received a letter from my consultant to my Doctor saying rituximab can last between 6 months to 3 years but on average it lasts 1 year.
I am not looking forward to the treatment but needs must.
A little bit about myself.
I am a 44 year old male, I was working full-time as a support worker with people with Huntington Disease until April but I have deteriorated a lot since then so I am unable to work at the moment.I live in Kent and the hospital I use is the Kent and Canterbury.
If you want you can contact me here or on Facebook.
Hope you are keeping well,
Martin Brace

Hi Martin

It has been some time since the last post and I was wondering how you are?
My treatment is half way through, iv Rituximab and Cyclophosphamide for two days with five days of Prednisilone tablets. Then three weeks off and it starts again so for me just 11 weeks to go. So far so good, a bit of tingling in the arms and hands on day 7 and pins and needles but it soon eases after another day or so DV. Main problems so far is with the anti sickness and anti nausea tablets which adversely affected my digestion but were optional, I am much better off without them.

Needless to say that I am keeping well away from folk as my immune system is compromised and taking all other recommended precautions because, being retired, I can.

How about you then, your condition was much more rapid onset than mine, I do hope that you got the funding and the Rituximab helped.

Best wishes

John

high titers?
 

Does anyone know the significance of high titers? My neuro didn't give me a number, just said they were very high. He was surprised that my NCV was normal and did a skin biopsy. No results yet.
Anyone with Sjogren's and Anti-mag pn?

Welcome to NeuroTalk:

We have some threads on this subject:

http://neurotalk.psychcentral.com/sh...light=anti-mag

http://neurotalk.psychcentral.com/sh...light=anti-mag

http://neurotalk.psychcentral.com/sh...light=anti-mag

Thanks MrsD
 

I did a quick search but had missed some of those posts.

Hi John,

Sorry for the delay in re-posting.

I was awarded the funding for Rituximab and I received It once a week for 4 weeks and the last one was on the 23/12/2011.
The Rituximab was given on it`s own with no other medication but had no effect at all. So I deteriorated again back to the wheel chair. I went in to hospital in June to have plasma exchange for eight weeks it worked well but my Dr said I will need plasma on regular intervals, probably every six to eight weeks.
At the moment very upset with my Dr as he leaves every thing up in the air and leaves me hanging and he makes me feel that he doesn't care. I was meant to have an appointment on 6/8/2012 but his secretary said he had an important meeting to go to, then a Sister got in touch and said he was on holiday, I have to now wait another month to see him.

Hope you are feeling better.
Many Thanks
Martin

rituxin
 

2014---I had the 4 doses of Rituxin in 2011 and it stopped the progression of the nerve destruction. My weakness was up to mid calf both legs and finger tips. Now Nothing in fingers and just numbness both feet below ankles. I walk and travel and drive. I see my neurologist every 6 months and as of now no further treatment needed. I would definitely have Rituxan again no matter the cost to be able to walk and write.