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Old 09-18-2013, 07:52 AM
twitchyfirefly twitchyfirefly is offline
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Join Date: Jul 2010
Posts: 49
10 yr Member
twitchyfirefly twitchyfirefly is offline
Junior Member
 
Join Date: Jul 2010
Posts: 49
10 yr Member
Default Mmn?

Quote:
Originally Posted by Dirtywhirl View Post
I have progressively been getting worse with my diagnosis, one that I believe I have not come to terms with until recently. The symptoms are just too hard to ignore; just too many bad days versus good days anymore that I can blame my issues on. I was first diagnosed with severe spinal stenosis in 2010 after long battle with back problems. I was told by one of the specialists that I was too young for this kind of thing to be happening and to just "loose some weight" and that "I was fine". I blamed his bad bedside manner and I chose to ignore the problems. I lost about 30 lbs weight and in 2012 the problems came back only this time it was not a lower lumbar but a cervical beginning with my left arm hurting and MRIs of head/neck/spine and there is some compression but not bad enough to operate. My left arm pain caused a sleeping disorder, which created the need for sleeping pills and so on. I have had a sleep study and so much more. Today's reality is that I am a graphic designer that relies greatly on her hands and every day I suffer from neuropathy. My lack of sleep makes is difficult for me to communicate with clientele and my personal life suffers from it as well. I suffer from "brain fog" and embarrass myself often. I am also a private person so I find it very difficult to tell people my "story" in real life. I feel weak and out of control. My second neurologist dx'd me with multi-focal motor neuropathy, restless leg syndrome and fibromyalgia. I was hoping the diagnosis would go away or that he was wrong but its not and its still here and it’s depressing. I don't like to be all doped up on medication, in fact, I rather the opposite. I have tried rehabilitation and a chiropractor. I just received a TENS unit that I got to take home (insurance covered) and I am tring to get into the habit of using often. I've recently tried Lyrica, and although it did its job, I was disconnected, depressed, unfocused, blurry eyed, and the scariest thing is that I was S I L E N T. I have also tried and am also still on Gabapentin - it gives me the least amount of side effects. I am depressed every single day and the pain doesn't seem to subside. I have had a number of tests to rule out a number of other things. A spine specialist has looked at my spinal stenosis and although it is severe he does not see that it should be operated on so that route is out - at least for now. At this point we are talking to the neurologist about getting into the MAYO clinic because I just can’t go on like this. I just don’t know what else to do. Does anyone have a similar story? Thanks for your time.
First of all, when MMN is suspected, they usually try IVIg (immunoglobulin); if you see benefit, then the MMN diagnosis is likely correct. IVIg only helps in about 70% of cases, however.

I have found that with an MMN diagnosis, all you have to do is call the Mayo Clinic neurology department, tell them your diagnosis, and they will get you in fairly quickly. That's what I did, and it did not even require a doctor's referral. I related this story in a forum devoted to MMN, and subsequently one or two other people had the same experience.

MMN is very rare, and most neurologists have no experience with it. That's why I went to the Mayo Clinic — they see as many cases as anybody. Even so, when I asked my Mayo Clinic doctor how many MMN patients he sees in a year, he said maybe 12.

I would urge you to search out the MMN-dedicated sites *edit*
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Last edited by Chemar; 05-14-2014 at 05:31 PM. Reason: NT guidelines
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