Multifocal Motor Neuropathy denial
 

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.

Botox?
 

Has your neurologist said anything about Botox injections? My head leans to the Rt. & I have terrible tremors. Every 91 days my neurologist gives me about 10 shots of Botox in back of of my neck & it helps tremdously! I take a drug called Zytaze for 5 days before the shots to prolong the effect of Botox.