After 10 years of diagnosis of monoclonal gamopathy and noone suggesting any help, I went to another neurologist who did blood tests and diagnosed me with antimag. I have had 13 plasma pherisis treatments since April/09 and have seen positive results. Not huge overnight improvement, but slow and I am walking better. I want to mention that during the last several years I have exercised 3 times/week swimming laps and really working legs and feet hard and I believe that this has helped recovery; i.e., keeping the muscles in good shape.

HERE!...
Well, I'm making my second trip to the hospital for my second in 4 months multi-day neuropathy drip, the admitting doctor indicated in our discussion my diagnosis of "anti MAG neuropathy" (to coincide with my mono clonal gammapthy. He Goggled the subject on my laptop - and I saw your post. One in the same issues Granacki - like listening to myself...same age (60), same almost everything. If this [2nd] 4-day treatment doesn't work...then there is a [dialysis] form of treatment which as described to me "replaces (someone elses) protein serum for the anti-MAG one I/we have." SO, one (painful) step at a time. It's all very frustrating, debilitating, and painful by the day. But I have resolved to keep walking (every other day as you for recovery minus my summer mowing), using my Bowflex every other day for strengthening, and hopefully we'll see results this [last] time around before we get into what my neurologist calls the "invasive" procedure I mentioned above. Also, had the scare where my N-Dr sent me to hemolotolgist/oncologist because of the mono clonal gammapathy of "unspecified origin," which could - or not - be associated with my neuropathy...and potential for or cause of bone/blood cancer(s). Negative, with Anyway, keep heart. Reply an/or email, we can either commiserate or see if we're both experiencing likewise issues and what one might be doing.
Good luck.

Hello, Dr. Buddie. Sounds like you and I share a diagnosis -- mine was 10 yrs ago as "monoclonal Gammopathy". The neurologist just gave it a name and sent me on my way -- guess they didn't have the science to treat it in those days. Recently went to OSHU and they did highly specialized blood tests, hence the "antimag" diagnosis and a process of plasma pheresis was recommended. Have had 13 treatments since April 2009 and am getting better - slowly. Yes, having the port installed and dealing with it over the months was scarey at first and certainly unhandy to live with. BUT VERY HANDLEABLE as compared to getting worse!!! The pheresis process took abut one hour each time. It takes all the plasma out and they discard it with all the bad proteins (and the good ones) and replace it.
The dialysis staff is hugely knowledgable and helpful and i always felt secure. As I have mentioned I AM GETTING BETTER - more sensation in feet and ankles -- I am more steady walking - haven't tripped in months. I've just had the port removed -- I may have a fistula in my arm installed if further treatment is indicated. dr. also talking about trying Rituxan in the future, as an alternative. I have a few months to see what happens. I am going to Europe in October and will celebrate my 70th Birthday on a rivership on the Rhine. Meantime, just wanted you to know that Plasmapherisis was a help to me. Good luck. Nancy W.

I'm new to this site - don't quite know how to use it! I've just been diagnosed with anti-MAG neuropathy. Neurologist tells me it is quite rare, usually hereditory. My next step is to have a work-up with hematology, possibly a bone marrow biopsy. I have tingly and numbness in toes, seems to have progressed in the last two years to ball of foot. So far I'm able to function normally, walk my dog every day, go to gym 3/week. It is more of an annoyance than painful. Am anxious to get tests from hematology.

Here's a site on Anti-Mag neuropathy.

http://www.athenadiagnostics.com/con...Polyneuropathy

Maybe you have read it.

--is hereditary; quite a lot is acquired, generally as a cross-effect of monoclonal gammopathy or other immune blood disorders, which is why they want the hematological work-up.

Take a look at the following from the Washington University at St. Louis neuromuscular website--it's written in doctorese shorthand, but very comprehensive:

http://neuromuscular.wustl.edu/antib...imdem.html#mag

http://neuromuscular.wustl.edu/antibody/mprotein.htm

My husband has had this type neuropathy for many years. He's now 76. Luckily he has no pain, mostly numbness esp. in feet. Recently (the past year) developed balance problems and walks with a cane. We tried the Rituxan infusion that has helped some, but it benefitted him hardly at all.
He has no problem bicycling and it's good exercise.

Not to cause more confusion, but I also have anti-MAG neuropathy (another Nancy!) and have been diagnosed for about 9 years (when I was in my 40's). Initially I received IVIg infusions (for several years) with limited improvement of my symptoms. I moved to the Pacific Northwest, and have been seen by a neurologist in Seattle. My insurance doesn't cover Rituxan (considered experimental for this condition) and was offered chemotherapy. I'm not ready for that so I have just been going along with symptom control (Cymbalta, neurontin, acetominophen, ibuprofen, antihystamine sleep aid). I continue to look for clinical trials using Rituxan as it's treatment arm, but nothing so far. It is helpful to hear what others are doing, around the world. I have burning feet (after walking or standing), sensory abnormalities, unsteady gait, fatigue, restless legs syndrome and weakness of leg muscles. Thanks for all your posts. Lets keep eachother informed!

NancyKay

My husband had this type of neuropathy dx at 65 has had symptoms for 3 years. Luckily he has no pain, numbness in feet. Recently developed balance problems because of weakness in R foot. We are trying to get the Rituxan infusions but insurance does not want to cover our doctors are trying to write letters of medical necessity to the insurance company. Still waiting.
How did you get your approval for your infusions?

I have anti-mag monoclonel gammopathy. I have spent almost a year trying to get Rituximab. The hemotologist at the Mayo clinic suggested that I have my bone marrow checked for Waldenström's macroglobulinemia. It it a very low grade lymphoma that on its own is not of concern. I did have it checked and I did have it. This lymphoma produces demyelinating polyneuropathy with immunoglobulin M (IgM) monoclonal gammopathy. According to Mayo many people with anti-mag have this lymphoma.

The good news is that Rituximab is approved for Lymphomas or non-hodgkins lymphomas and therefore covered by Medicare and other insurance companies.
Also if you have an non-hodgkinins lymphoma the makers of Rituximab will assist with the product if not covered by insurance

Bob