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12-28-2008, 07:53 AM | #1 | ||
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I was diagnosed with MMN a few years ago - initially just some minor weakness in my right hand. Gotta say my consultant wasn't really very helpful, but after a little research of my own, I decided that I'd prefer not to seek treatment. My main reason (apart from avoiding blood borne infections - i am a bit paranoid ) was that I read that IVIG treatment only worked for a few years, then it all started to go downhill again. I figured that it would be better to wait until (if) my symptoms got serious before treatment, as that would be when I'd really need an effective treatment.
Now I have another symptom (weak calf) and have done a little more research, I am beginning to wonder if I made the right choice. Wondering about the opinions of anyone who has taken the treatment, and those who have not. Also, how does insurance typically take to IVIG for MMN? Will it pay for the whole treatment, or is it out of your own pocket? |
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01-03-2009, 11:14 PM | #2 | ||
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God Bless Everyone and their families that have been affected. Good Luck, Steven |
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01-13-2009, 06:17 PM | #3 | ||
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I have had MMN with CB since 2000. Left arm and hand weakness and tremors. Symtoms began in 2000 and diagnosed in 2001 ( first diagnosis was Motor nuerone), began treatment with Ivig (Intragam) 150gms at three monthly intervals, this treatment increased strenth levels in the short term. Over the years the time between Ivig infusions has been decreased. Now recieving 90gms every 5 weeks. My self testing is to do a bicep curl with a 1 kg weight and record the number of times that I can lift it. At the start my peak was 30 times now my peak is 9 times, so the effectiveness of the Ivig is decreasing. These records have all been charted and the Drs love it.
In October 2007 I was treated with Rituximab, this increased my strength level (16 lifts) but only last for two months then back to previous levels. In Dec 2008 I commenced a six month course (1 per month) with cyclophosphamide, I have had two doses as well as continuing the usual Ivig. Small improvement after the first treatment, still waiting for the second to kick in. has anyone else been down this path and is it worth it. |
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12-01-2013, 03:08 PM | #4 | ||
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12-01-2013, 03:13 PM | #5 | |||
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Welcome to NeuroTalk:
To make a new thread of your own, you need to be on the first page of the forum it is destined to be on. This forum Neuromuscular.....has this link: http://neurotalk.psychcentral.com/forum19.html In the upper left is NEW THREAD button. Click that and an text box will appear and you type in your question or statements that way. Each forum has a first page... Click on NeuroTalk Support Groups at the top of any page and you will then link to the main index with all the forums listed.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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05-31-2009, 04:11 AM | #6 | ||
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I am awaiting a diagnosis of either MMN or ALS and my referring physician seems to think the treatment of choice would be IVIG if it's MMN. I was hesitating as to whether or not I wanted to go this route or find some type of natural (herbal/physical) therapy instead. I think with everything I've read here and other places on this site my best bet would be to go with the IVIG. Thanks for helping me make this decision prior to the diagnosis. It has helped clear some of the brain fog I've been experiencing lately. -B
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"Thanks for this!" says: | (Broken Wings) (06-08-2009) |
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