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Old 06-15-2011, 11:18 PM   #1
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Madsam

Hi. Does anyone here have MADSAM? It's related to CIPD and GBS. I currently get an IVIG infusion every month. I was using a cane prior to the IVIG. Anyone with the disease or information would be greatly appreciated. Thanks.

 
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Old 06-01-2012, 12:56 PM   #2
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Re: Madsam

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Originally Posted by PhyllisTx View Post
Hi. Does anyone here have MADSAM? It's related to CIPD and GBS. I currently get an IVIG infusion every month. I was using a cane prior to the IVIG. Anyone with the disease or information would be greatly appreciated. Thanks.
Hi Phyllis! I have MADSAM Polyneuropathy. I was hoping there would be someone whose symptoms/treatment I could relate. I was diagnosed in January of this year, after a two week stay in the hospital. Such burning and tingling and buzzing..and especially weakness in my arms and legs. I couldn't walk by myself even after I got home. Thank goodness my sister decided to stay with me for ten days. Started out with IVIg- 5 day course. Helped me a little but not significantly. A month later I had a 2-Day course of the IVIg. Followed up with my Neurologist a few weeks after. To make a long story short, nothing has really helped the weakness. I'm really tired all the time, but can't go to sleep until 2 or 3AM because of the 60 mg of Prednisone daily. I've been on this evil/miracle drug for 4 weeks now..and again the weakness is still present, and the tingles/pins and needles have come back. It could be much worse, but I become discouraged when I don't see/feel progress. Just returned from seeing my doctor again. I'm to stay on the Prednisone and receive the infusions, as well. He said sometimes the pred takes 3-6 months to really kick in. I am much worse in the evening and at night. You? And, when I do a lot during the day, I'm weaker still later. Such a strange disease this is. I'm happy to meet you. Linda

 
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Old 06-01-2012, 07:43 PM   #3
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Re: Madsam

Hi Linda. It's nice to meet you. I just got back a little while ago from getting my infusion. I'm so sorry you feel so bad. It's taken soooo long to come up with something that helps some. I take 2400 mg. of Neurtion, pain meds, and infusion once a month. I think I will ask for it once every three weeks. This last week I went back to walking into walls and just fell over one day. My muscles had a mind of their own. I was on prednisone when I was first diagnosed with Lupus. That is a love/hate med. I'm on a blister pack of it right now. I hope you have a good doctor. That makes all the difference in the world. I love my neurologist and my rheumotologist. Hang in there and hopefully between you and your doctor you can come up with a good plan for you. I know how you feel. It's nice to talk to someone who really knows HOW YOU FEEL! I'll keep you in my prayers and send you soft hugs.

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Old 07-24-2012, 01:08 AM   #4
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Re: Madsam

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Originally Posted by PhyllisTx View Post
Hi. Does anyone here have MADSAM? It's related to CIPD and GBS. I currently get an IVIG infusion every month. I was using a cane prior to the IVIG. Anyone with the disease or information would be greatly appreciated. Thanks.
I was diagnosed with madsam polyneuropathy in January of this year. It started with nerve pain in my mid to upper back, extreme constant pins and needles in my fingers and toes, with the nerve pain coming and going on various parts of my body. In the hospital (2 weeks) and for days after my lower body weakness was pronounced. I could not stand or walk or bathe without assistance. After I'd been home for about 10 days, my Neuro gave me a nerve conduction test, as well as the standard neuro exam..and finally a lumbar puncture. Though the protein found wasn't as high as he expected, the diagnosis stuck. Said if I wanted to know more about it I should research CIDP, since many of the symptoms and the treatment were the same for both nerve diseases. I did receive 2 rounds (5days, then 4days- abt a month apart) of IVIG. 1st round, I felt a bit stronger; 2nd round- little to no difference. Was on 60 mg of prednisone per day for 2+months. Gained 15 pounds. Now I'm being tapered off the pred and he is replacing with Immuran. Says it won't show a diff until I've been on it for 4 months. I'm stronger in the morning and start feeling the weakness as the day progresses. Any light you can shed on this disease would be appreciated. Thanks. Linda
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Old 07-25-2012, 05:37 PM   #5
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Re: Madsam

Hi Linda. I'm sorry you're going through all this too. Fortunately the IVIG helps me a lot. I know I would be in a wheel chair without them. My neuro is really good about discussing things and giving information. One day he told me that MADSAM is really a chronic form of GB. It's really the same disease but GB hits you differently, with so many things at one time. MADSAM has the same problems but they are spread out and usually not as bad. I know you have read everything you can about the disease. That's what I did. I have so many autoimmune diseases that at least I understood what he was describing this awful disease. Have you noticed all our autoimmune diseases cause fatigue! The basic problem with this disease is that our immune system destroys the mylin (sp) that protects the nerves endings. The nerve can repair itself to some extent. The reason for taking our drugs is to stop the destruction. If the damage gets to bad it can't repair itself. Research GB and maybe that will help. I'm really not good at explaining things. But, if I can help again let me know.
Phyllis

 
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