Neuromuscular In memory of Rose Marie.


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Old 06-04-2009, 08:11 PM #21
di2005 di2005 is offline
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Default my MMN started the same

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Originally Posted by ramcatluvr View Post
Thanks so much for your information on the different websites. So far I've been doing my own research (to my hubby's chagrin) to try to find out what the heck is going on with my body. Had symptoms since Dec 08 and finally getting to the point with doctors that hopefully, I will be diagnosed within this coming month of June. CIDP was ruled out already along with MS and LUPUS,etc. Very good neurologist did all the tests thinking I had CIDP and surprised himself when the tests came back negative for it. He has referred me on to a different type of neurologist now when he said I might have MMN. I have seem to come down to either MMN or possible ALS. Doctors don't seem to want to help much and was having insurance problems with the referrals to more major doctors. I think I'm finally over it. My problems started in my legs, which seems to be sort of unusual. Most people seem to have it start in their hands. Anyway, thanks for all of the different info. -B
Hi ramcatluvr, my MMN started the same as yours. Actually I had right foot drop which has gone slowly up my right side. This all started about four years ago. I have had a couple of rounds with IVIG treatments and I feel they have helped. I would like to hear from you, you are the first person I know of like me. di2005
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Old 06-26-2009, 12:22 PM #22
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Hi,

I am new to this post----just wondering if anyone has had experience with Multifocal Motor Neuropathy with Conduction Block and what has worked for you. I am scheduled to receive IVIG therapy soon, and am curious about that as well.....Any info. would be greatly appreciated..
Thanks !! Doug
Doug, I've had MMN since 1995, and have been on IVIG since 1997. I'm still working full time and living a fairly normal life. I was an active marathon runner when I was diagnosed so I have given some things up. I recieve a "treatment" every 12 weeks and this is crucial to my well being. As a veteran of this therapy, I would be happy to answer any questions you might have.
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"Thanks for this!" says:
aneczka (11-12-2014), di2005 (07-27-2009)
Old 07-27-2009, 01:53 PM #23
di2005 di2005 is offline
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Doug, I've had MMN since 1995, and have been on IVIG since 1997. I'm still working full time and living a fairly normal life. I was an active marathon runner when I was diagnosed so I have given some things up. I recieve a "treatment" every 12 weeks and this is crucial to my well being. As a veteran of this therapy, I would be happy to answer any questions you might have.
Hi, I am interested in the fact you have been taking treatments for several years-I think that is what I am facing too. Do you still have to have the EEG's occasionaly? I feel they are so barbaric and just plain horrible to go through. Do you take any other treatments with the ivig? I was diagnosed about three years ago and most of my trouble is in my legs. I need braces for foot drop so I can walk using a walker. My upper body so far is okay, however I broke my leg a month ago, so now I am looking at a bunch of therepy to keep what strenght I have left. Any information would be appreciated. Di
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Old 09-09-2009, 08:43 AM #24
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Default Latest news?

I have MMN. I first experienced symptoms almost 20 years ago. They were so mild I did not act upon them at first. When I did it took several attempts and multiple doctors to get a diagnosis. I start IVIG on Sept 14 2009. Anyone had luck with Rituximab? My symptoms seem to be progressing more quickly now with the jerks getting worse but I have not had cramps yet.

I live in Dallas and am looking for a support group or even one other person to talk to.

Nate
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Old 09-23-2009, 06:04 PM #25
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Originally Posted by di2005 View Post
Hi, I am interested in the fact you have been taking treatments for several years-I think that is what I am facing too. Do you still have to have the EEG's occasionaly? I feel they are so barbaric and just plain horrible to go through. Do you take any other treatments with the ivig? I was diagnosed about three years ago and most of my trouble is in my legs. I need braces for foot drop so I can walk using a walker. My upper body so far is okay, however I broke my leg a month ago, so now I am looking at a bunch of therepy to keep what strenght I have left. Any information would be appreciated. Di
Di, I have had one EEG since the original one that cinfirmed my diagnosis. There was no clinical improvement from the first one but I was feeling much stronger due to the IvIg. As mentioned, I've been on IvIg for about 12 years with no side effects. I also take a prescription naproxen (500mg)an occasional tylenol #3 w/cod when the aches are really bad. The medicine that helps me the most is provogil (200mg). Provogil gives me the energy to exercise and stay active which helps keep my muscles from atrophying. This has worked for me. I hope it will help you.
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Old 12-09-2009, 12:45 AM #26
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Default I have had Multifocal Motor Neuropathy for 20 years

Hi Nate,
I would be happy to talk with you. I have had MMN for 20 years and have learned a lot about what helps.

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I have MMN. I first experienced symptoms almost 20 years ago. They were so mild I did not act upon them at first. When I did it took several attempts and multiple doctors to get a diagnosis. I start IVIG on Sept 14 2009. Anyone had luck with Rituximab? My symptoms seem to be progressing more quickly now with the jerks getting worse but I have not had cramps yet.

I live in Dallas and am looking for a support group or even one other person to talk to.

Nate
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Old 12-09-2009, 12:49 AM #27
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Default Do you get aches from MMN?

Hello, I'm curious about these aches you get. I have had MMN for twenty years and I don't have any pain or aches. I was curious what type of aches you get and what you think is causing them.
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Old 12-14-2009, 09:04 AM #28
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I also have MMN. officailly diagnosed last year after initially being diagnosed with MND (ALS). I've had 2 bouts of IVIG which has had some positive effects. Given me a little strength back last one was sep 2009 so i'm ready for another session.

Would love to here from others and their experiences of the disease. Also what other treatments are out there
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Old 12-15-2009, 11:51 PM #29
fireman0224 fireman0224 is offline
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I also have MMN. officailly diagnosed last year after initially being diagnosed with MND (ALS). I've had 2 bouts of IVIG which has had some positive effects. Given me a little strength back last one was sep 2009 so i'm ready for another session.

Would love to here from others and their experiences of the disease. Also what other treatments are out there

You might want to talk to your doctor about Rituxan (Chemotherapy) it has done wonders for me in a matter of 10 months, I noticed HUGE improvements of strength and stamina with this treatment. While im taking Rituxan i still take IVIG treatments.

Best of Luck
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Old 01-02-2010, 11:22 AM #30
Kelly in Oklahoma Kelly in Oklahoma is offline
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Quote:
Originally Posted by nate View Post
I have MMN. I first experienced symptoms almost 20 years ago. They were so mild I did not act upon them at first. When I did it took several attempts and multiple doctors to get a diagnosis. I start IVIG on Sept 14 2009. Anyone had luck with Rituximab? My symptoms seem to be progressing more quickly now with the jerks getting worse but I have not had cramps yet.

I live in Dallas and am looking for a support group or even one other person to talk to.

Nate
How long did it take you to get a diagnosis? I was finally diagnosed in Oct. 2009 and finished my first round of IVIg Dec. 14. Are the jerks the only symptoms you have? I live in the Tulsa, OK area.

Kelly
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