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 any longer; 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 of 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 about the problems. 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 or anything to offer? Thanks for your time.

I see you are a graphic designer , that entails a lot of forward head/shoulders postures, repetitive motion...??

If there isn't a definitive test for Multifocal Motor Neuropathy , you might want to explore our thoracic outlet syndrome forum (TOS) for short..
It can be a factor when you have chronic RSI's & forward work /activity postures, along with many other causes like previous whiplash, sport injury, etc.

Even if the dx doesn't really apply we still have many kinds of therapy posted for chronic pain and self help.
http://neurotalk.psychcentral.com/forum24.html
check out the useful stickys threads there.


I recall many with chronic pain will have an antidepressant rx added and it adds to the effectiveness of pain relief.
You might ask about that.

Thanks Jo*mar

I will consider the thoracic outlet syndrome. I do repetitive motions but work day to day on different jobs and not so much like a "classified ads" placement artist. I am lucky enough to be able to get to get up from my desk and deliver, copy and cut on the cutter and ship to counties. I stay pretty active. Thanks for the input though.

I have tried Effexor and it seemed to have the opposite effect on me as far as anti-depressants go. We've also tried Lyrica and Gabapentin. I seem to get very depressed easily.

}At work: I probably do have some repeated movements happening but I am not sure what to do about that. It is my livelihood. This is what I do. I try go get up and move about; take my lunches. and get away often. I try to de-stress the best that I can.

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*

Thank you Twitchyfirefly. I think thats why I faced such denial with this. I do have another appointment with my neurologist tomorrow and discuss this further. My husband says i am a terrible patient. I was a sassy, strong, confident person before all of these issues started to control my life and now I cant seem to get out from under their shadows. I just want to understand and have a little of my life back.

I merged your duplicate threads into a single thread.

I just got off the phone with the Mayo clinic in Minn. and they did just what you said... after realizing that I said "multifocal motor neuropathy" and not just neuropathy they said to treat me the sooner the better and i willl be making my way up there Monday. I need to make arrangements but I was surprised to get the help so promptly. Thanks.

Monday? That's incredibly fast! Good for you!

This was my experience in October 2010: my initial visit to the Mayo Clinic (Minnesota) lasted five days. There is no test for MMN, so they spend a lot of time ruling out everything else, including things like heavy metals, Lyme disease, etc. (after three years of subsequent research, I wish they had included gluten sensitivity in their testing; I don't believe they did. Celiac disease can mimic MMN. Lots more information in the forum.) Prepare yourself for a lengthy EMG. Since you have other issues, there might be even more testing.

One thing I really like about the Mayo Clinic is that when you're talking to a doctor, they're not looking at their watch every five minutes. My first office exam, with two neurologists, lasted a long time. Since my initial visit I have been seeing Dr. Jones, who is very sympathetic, friendly, focused on me when I'm there, open to my suggestions, and willing to answer any questions.

Once they are fairly sure of the diagnosis, they work out a treatment plan for you to follow back home at your local facility. I get my infusions at the chemo center at the local hospital. I don't have a local neurologist — we don't have any here – so I run everything through my GP.

I was very lucky to have good insurance (being self-employed I have to buy my own, here in the U.S.) and, knock on wood, they have never squawked about any of the expense. Immunoglobulin is incredibly pricy. My initial visit to the Mayo Clinic, with all the testing, was about $17,000; my subsequent semiannual visits to Dr. Jones run about $350 (for an office visit only, no testing). I live 1000 miles away from Rochester, but luckily I have family close by, so I always drive and work in a family visit with my checkups.

My favorite place to stay in Rochester is the downtown Days Inn. It's kind of funky and old with lots of character. The other advantages are that it's relatively inexpensive and only one block away from the main clinic building where Neurology is based. My first visit I stayed at the Motel 6 which is a few miles away; all the local hotels have a free shuttle bus to the clinic, but the Days Inn is almost as cheap as Motel 6 and within walking distance, and a lot nicer character, so that's where I have stayed ever since. Also there is free parking at Days Inn. You have to pay to park in Rochester otherwise.

Any other questions, just ask!

It is all great to hear. I am also going in to see Dr. Jones. I have had a lot of tests already to rule out a lot of things so that should be easier for them. I know there will be a lot of testing. We live in the middle of Missouri.. our visit will be pricy too. I have a lot to learn about MMN I suppose but the road has been long and dark so far and I need relief.