FAQ/Help |
Calendar |
Search |
Today's Posts |
|
09-21-2007, 09:30 AM | #1 | |||
|
||||
Member
|
Hi Michaeljay! Welcome to our wonderful forum!
Sorry to hear you have Anti-mag but you have come to the right place to learn about it and meet others with PN!
__________________
. Dx'd with Spinal Arthritis 09 Upper and lower Spinal Cord Stimulator surgery Replaced IV port 09 Had surgery for IV port for IVIG infusions 07 Halo 360 & 90 procedure for Barrett's esophagus Dx'd Chronic Axonal Neuropathy & Myopathy June 07 Dx'd IC May 2006 (after suffering for 25+ yrs!) Gall bladder surgery Aug. 2004 Gastric Bypass Dec. 2004 Dx'd: Barrett's Esphogus July 2004 Bladder surgery 2000 Dx'd: IBS 2000 Hysterectomy (fibroids) 1999 Laminectomy 1989 Dx'd: Degerative Disk Disease 1989 Cyst removed from my ankle -twice 1986 |
|||
Reply With Quote |
09-23-2007, 10:12 PM | #2 | ||
|
|||
Junior Member
|
Hi Michael Jay
So you've had the rituxan therapy. How bad was it? My doctor said not to try it until either I had numbness up to the knee, or muscle weakness in the ankle (like foot drop). I've read accounts of people shivering and shaking throughout and other nasty side effects. Although it's supposed to slow down the overactive Igm protein so the nerves can heal for awhile. So far my neuropathy is limited mostly to the feet and mostly sensory. No balance or fatigue issues. What do you mean by 1 1/2 days in the gym? Do you have a particular exercise program? |
||
Reply With Quote |
10-02-2007, 11:15 PM | #3 | ||
|
|||
New Member
|
sorry for the delay, I'm back at teaching..
the side effects were pretty intense with the rituxan but not so bad. the issue i have is that there isnt a clear indication of long term efficacy/ with considerable risk I think. I would look into the research a little more before. I am about the same as you mostly in the feet. I am looking at oral tolerance approaches now with bovine myelin have you checked this out?? be interested in hearing more from you given we share the same affliction |
||
Reply With Quote |
10-08-2007, 11:35 PM | #4 | ||
|
|||
Junior Member
|
Hi again Michaeljay
I never heard of bovine myelin. It sounds promising. I keep thinking if the doctors can't stop the blood from producing too much IgM protein, and they can't stop the protein from attacking the myelin, then maybe over-building up the myelin will at least make it resist the anti-body attacks better. So I have been taking methyl B12 and also lecithin which is supposed to build up myelin. Can't decide if it's helping. I don't seem to have as much burning and tingling and buzzing in my feet, but the numbness keeps progressing, which I assume means the nerves are slowly dying. My next try is going to be anodyne therapy. It's supposed to stimulate the nerves somehow. You said you can't type. How does it affect your hands? |
||
Reply With Quote |
01-10-2012, 08:55 AM | #5 | ||
|
|||
New Member
|
Quote:
Rituxan is not available in Canada ... but maybe someday... so far i have lost most of the feeling in my feet (apart from some tingling and occasional pain) balance is definitely getting worse... especially in darkness...several times i have fallen down the stairs as i mis-step and lose it ... fortunately only fallen from lower steps ... Doctors do not know how i acquired this ... it may be because of early radiation many years before ... ??or possible street drug use back in the seventies? possible frost bite back in the seventies? anyone experience a similar thing? thanks to all on this site... z |
||
Reply With Quote |
07-27-2008, 11:01 PM | #6 | ||
|
|||
Junior Member
|
I was diagnosed with anti-MAG neuropathy in 2002. I was successfully treated with IVIG until 2007. It didn't seem to bring any improvement, so I quit getting the treatments. I am doing OK, as long as I don't get hot or walk or stand too long. I am now living in the Pacific Northwest where it is cool and I am only working part time. I have some balance problems and some coordination problems, but otherwise function pretty well.
How are you doing? Quote:
|
||
Reply With Quote |
06-09-2009, 09:30 AM | #7 | ||
|
|||
New Member
|
I wonder if you are still on this site..funny I have MAG too and have actually stayed on Lummi island.
Write back if your out there. Maglady |
||
Reply With Quote |
06-10-2009, 08:14 AM | #8 | |||
|
||||
Senior Member
|
".............I wonder if you are still on this site......."
I doubt it
__________________
Bob B |
|||
Reply With Quote |
08-29-2009, 10:32 PM | #9 | ||
|
|||
Junior Member
|
Quote:
How amazing that you have anti-MAG neuropathy and stayed on Lummi Island! I am 54 and have been diagnosed for about 8 years. I've gone down to Virginia Mason Hosp. to see a neurologist there. I'm not currently receiving any treatments, but would like to try Rituxan. Let me know what you are receiving in the way of treatment and where you are going to get it. NancyKay |
||
Reply With Quote |
09-16-2009, 01:32 AM | #10 | ||
|
|||
Junior Member
|
Quote:
Hi Maglady, It's great to hear from you! How are you doing? How long have you had anti-MAG neuropathy? It is a bit over 7 years for me. I am seeing a neurologist at Virginia Mason in Seattle. I'm not sure what treatment to try next. IVIg worked for a while, but I've been off treatment for almost 2 years and the numbness, burning, poor coordination & fatigue just keep slowly progressing. I need to get started on something that works. Hope to hear from you soon. Where did you stay on Lummi Island? NancyKay |
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
Anti-MAG neuropathy | New Member Introductions | |||
Nutrition help for neuropathy? | Peripheral Neuropathy | |||
Neuropathy | Peripheral Neuropathy | |||
SCS for neuropathy | Chronic Pain | |||
Possible new neuropathy med? | Peripheral Neuropathy |