FAQ/Help |
Calendar |
Search |
Today's Posts |
08-29-2009, 10:42 PM | #21 | ||
|
|||
Junior Member
|
|
||
Reply With Quote |
08-29-2009, 10:59 PM | #22 | ||
|
|||
Junior Member
|
Quote:
I have seen a neurologist at Virginia Mason Hosp. and I'm trying to decide which way to go with treatments. I was diagnosed about 8 years ago at the U. of Iowa Hosp. in Iowa City. I received IVIg for several years with some success, but it seemed to become less helpful over time. I would like to start Rituxan but will need to convince my insurance co. that I need it. Dr. John Ravits is the neurologist I am seeing. Hope to hear from you. NancyKay (Lummi Island, WA) |
||
Reply With Quote |
09-03-2009, 12:04 PM | #23 | ||
|
|||
Junior Member
|
Quote:
Hello. I am an antiMAG person too - diagnosed 10 yrs ago with monoclonoal gamopathy but was never offered any treatment until this year. Slowly it got harder to walk, balance got worse, etc until I insisted on seeing a new neurologist. Was referred to Oregon Science & Health U & Hospital. Good news - I've been on plasma pherisis for 4 months and have seen steady (if slow) improvement in my walking and steadiness. Have had total of 13 apherisis treatments given through a subclavian port, which is not a very handy thing to have (no showering, swimming, kyacking, etc) Neurologist at OSHU/Hospital now recommending treatment with Rituxan but is leaving the decision to me. I'm thinking I may stay with "the devil I know" and have a fistula installed in my arm for continued pheresis treatment. I will certainly be glad to hear from and any others with ANTI MAG experience. |
||
Reply With Quote |
09-03-2009, 09:00 PM | #24 | ||
|
|||
New Member
|
Hi,
I'm new to all this stuff, bear with me :-). I am 25 years old and just over the past few months have noticed some numbness and tingling that's gotten progressively worse. I saw a neurologist after my MD suggested the symptoms warrented a workup. The neurologist saw some clinical mostly sensory problems, and ordered a brain MRI which was wnl, bloodwork where all was normal except my anti MAG was elevated to 3386 (999 was cutoff for abnormal). I had my EMG/NCV which this week which showed motor nerves ok but my feet and hands all had sensory symmetric "low and slow" velocities. I am still waiting for an official "diagnosis", and next week am having a lumbar punture and MRI of spine/thorax. The neurologist seems surpised that the bloodwork was positive for anti-MAG, said he ordered it without expecting anything in that direction, the GM1 was negative. Since my initial "occasional numbness and tingling" I am now experiencing (For the past few days) Burning sensation that stays (as opposed to coming and going) and is from my kneecaps down on both legs. My palms also burn almost constantly. In the past few weeks I've gone downhill fast. I didn't realize there was a difference with CIDP and anti-MAG polyneuropathy. Are they closely related? How were others diagnosed? |
||
Reply With Quote |
09-06-2009, 11:14 AM | #25 | ||
|
|||
Junior Member
|
Quote:
|
||
Reply With Quote |
09-06-2009, 12:22 PM | #26 | ||
|
|||
Junior Member
|
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.
|
||
Reply With Quote |
09-11-2009, 08:05 AM | #27 | ||
|
|||
New Member
|
Quote:
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. |
||
Reply With Quote |
09-12-2009, 09:32 PM | #28 | ||
|
|||
Junior Member
|
Quote:
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. |
||
Reply With Quote |
09-15-2009, 12:23 AM | #29 | ||
|
|||
Junior Member
|
I'm another one with anti-MAG neuropathy - diagnosed 7 years ago. Was on IVIg initially with good results. After about 4 years, it didn't seem to be helping with the symptoms any longer. I have trouble walking for very long, especially in hot weather. My feet just burn and feel terrible. Thus, I don't walk as much as I used to. My balance is poor - I really need to think about what I'm doing or I loose my balance and fall. No more running around in a hurry. I just started seeing a new neurologist in Seattle (Virginia Mason Hospital) and need to decide what kind of treatment to start. I would like to try the Rituxan, but my insurance isn't keen on paying for it. I am 54 years old and worry about what my future holds. I had an uncle die of Waldenstrom's Macroglobulinemia - so I worry about that as well. Would love to have some dialogue with others who have anti-MAG neuropathy as I feel alone.
|
||
Reply With Quote |
09-16-2009, 01:32 AM | #30 | ||
|
|||
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 |