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

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.....

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.

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

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

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

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.

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. Wiiexercizin'!