• Anonymous
      November 20, 2011 at 11:43 am

      Having visited the neuro surgeon at one of his clinics this week,and after various blood and other tests he has told me I have got Anti Mags Neuropathy.
      A condition which I suspect is in the CIDP family in that the nervous system
      is been attacked by anti bodies, he then told me that chemotherapy is a treatment that can be used to kill off the anti bodies, has anyone come accross this condition and had chemotherapy ?

    • November 20, 2011 at 2:11 pm

      i recently had a post questioning rituxin which is a chemo drug that my Dr is thinking of for me. Several of the people who replied had the anti-mag type neuropathy and had success with the rituxin. If you do a search on the anti mag their posts should come up.
      In my case I was never told i had anti-mag type so im not exactly sure why she’s thinking rituxin, it targets the b cells only and does not wipe out your entire immune system like some of the chemo drugs do.
      I was questioning some nurses who reguraly infuse rituxin–its much easier on the veins than other chemo drugs and can be put right in the arm like ivig if you have good veins.

    • Anonymous
      November 20, 2011 at 2:45 pm

      Bryn there used to be several people on the forum with anti mag, and some who got Rituxin. You should be able to find them with the search feature.

    • Anonymous
      November 20, 2011 at 2:50 pm

      Bryn check out Norb on the member’s list at the top of the page. He had anti mag and probably can direct you to others on the forum if you private email him.

    • Anonymous
      November 20, 2011 at 7:22 pm

      I have anti-MAG, 1/10.000 title, low level compare to others here (like Norb).
      In 2009 i was tried Imuran (azathiorine) for two month with good response.
      Now im on ALA (alpha lipoic acid) 3×600 mg.

    • Anonymous
      December 9, 2011 at 7:21 am

      Sorry to hear about the anti mag problem and the pain you mention in another thread. I have been away from the forum for quite a while, but just thought I would touch base this morning and I came across your posting.
      In my opinion, you may have what is called PDN (paraprotinemic demyelinating polyneuropathy) or IgM MGUS with polyneuropathy. Anti mag can also be produced by other proteins like IgG or IgA. Your protien electrophoresis will likley show an elevated level for one of the immunoglobulins. I have the same thing I think as does Norb and Allaug. It is a cloning of a B cell to produce ever increasing levels of anti mag, which is an antibody that attacks the myelin in the peripheral nerves. (hence “autoimmune” disease).
      I had Rituxan treatments which were successful. Timing is important because while the rituxan may be successful, scarring of the nerves will happen and a full 100% recovery may not be possible. I still have some numbness in my feet, but was fortunate to treat it in time to reverse the numbness that was occurring in my hands.
      I hope that this helps and that you can determine exactly what you have.


    • Anonymous
      January 29, 2009 at 2:44 am

      I am thinking alot of us may get neuropathy in the feet after several years of nerve damage there; as this is usually the last place to get the feeling back…if we ever do. I know of a few people now who have had feet and legs amputated due to neuropathy caused by back surgery, or by diabeties, or other diseases and injuries.
      Has anyone ever mentioned this topic to their Drs. ? It is a real possibility and not far off for those of us with nerve damage to our feet and legs that have been like this for several years and as we get more mature in life this topic could come up. Have a good day my friends.

    • Anonymous
      January 29, 2009 at 12:34 pm

      I would really like to hear from those who are 15-20 years out, and have nerve damage to their feet. I would like to know how their feet are looking now after this many years.
      Thanks, in advance, to all who may reply.
      Drummer Dude

    • Anonymous
      January 30, 2009 at 6:19 am

      Hey “Dude” 🙂 I’m just 14 yrs. out but my feet look just fine in spite of how they feel 😮 I have noticed that the 4th toe on my right foot tries to curl under a bit. When I am especially tired it scrunches my sock up. I am so grateful that there have been no issues similar to what one may see with diabetes. In the summer I go barefoot most of the time and try to remember to check them often. So far, so good 🙂

      PS ~ this is a great question!

    • Anonymous
      January 30, 2009 at 5:56 pm

      I am not quite two years into this–so no personal experience, but I do know some about risk to the feet. the major point is that the risk for amputation is due usually to an ulcer that does not heal and that becomes badly infected. The very best thing that anyone can do with neuropathy of the feet is to wear good shoes and socks and take lots of care of the feet–looking for signs of pressure or rubbing and being especially careful with any cut or scrape. People with diabetes do not heal as well because of the diabetes as well as the neuropathy, so my understanding is that they are at a much higher risk of getting a problem bad enough that the only way to solve it is amputation of a toe/part of the foot/the foot or whichever part is most affected.
      WithHope for a cure of these diseases

    • Anonymous
      January 30, 2009 at 8:33 pm

      I am over 32 years out and I have neuropathy in my feet. As I have aged, I am 51, it has gotten worse but mainly it is problems with sensation. My ankles and feet have been weak since I first got GBS. From everything I have read and from what my neurologist told me, the worst thing is that I may need braces on my lower legs one day. I wouldn’t worry about amputation. That is usually from circulation problems and infection caused by diabetes.

    • Anonymous
      February 23, 2009 at 12:20 pm

      Pheriperial neuropathy is my middle name. My feet and ankles look horrible with all these broken blood vessels. Both feet and toes are almost completely numb and freeze at night. My balance gets worse every year (also have no reflexes) and I am starting to fall with my left leg going out. Still, the neuros I have gone to only acknowledge that I have this condition but only suggest something like neurontin. I may actually try it again.

      Also, my arms and hands are getting this way too… lovely.

      Thanks for asking!

    • Anonymous
      February 24, 2009 at 12:36 am

      Chrissy, bless your little heart. You have my sympathy and empathy. You are way too young, like alot of others here, who have to struggle with this dadgum disease. Chrissy, I started to delete this post after posting it; as I was afraid it would scare some here. We cannot delete post now like we used too. We now have to have the moderator to delete it for us. I just never took the trouble to e-mail moderator to do this. It just blows my mind to see how some people on this forum who are able to work a 40 hour week after having this GBS. I Worked for myself, and loved what I was doing, but have not been able to return to work for the first day yet. If you are able to return to work after this disease…just count yourself blessed . Chrissy, I am keeping you, and others, in my daily prayers.
      God bless,

    • Anonymous
      February 28, 2009 at 7:10 am

      My feet and some muscles in my leg’s an back also.But I belive as long as you try an keep moving you will be fine. No reflex’s in ankel’s or knee’s so I don’t know how I get by but guess just will to live and go. Don’t drive unless I have to cause of this cause like now when sit for few have pain and numb ness all inlower back an in part’s of leg’s were I can feel. this is weird and fall sometime’s a week ago I fell back ward’s that was scary. But ground was soft and fell with stye lol.take care every one Jim:D

    • Anonymous
      March 6, 2009 at 10:28 pm

      The first time I had GBS in ’86 I had to sleep with my feet sticking out of the covers because if they got warm, they would go numb – much like a friend who had MS. This bout of GBS it didn’t happen. I am wondering if your thyroid might be involved? It might be a comibation of hypothyroidism and neuropathy. It’s just a thought.
      Before you take Neurontin, see if you can get the book OUR DAILY MEDS. The library should be able to get it for you. There is a chapter on the history of neurontin. Did you know that it first started out for epilepsy but was a last resort because it didn’t work. The drug company then tried to salvage it and offered it for practically every condition under the sun. Plus they had their reps tell the doctors that they could prescribe it for 4 times the safe dosage. It will open your eyes. I am not one to try and tell people what to do – but I just want them to make educated decisions. If neurontin works for you, then fine. But just know about it.
      I take B vitamins to repair the nerves and vitamin C since it stopped the gangrene iin a diabetic friend’s feet.