Hello everyone I was recently diagnosed with motor neuropathy, a long a frustrating year, as most of you have experienced. I have had all the tests, all neg including LP. Except for elevated ESR, herniated cervical, thorasic, and 2 lumbar discs, and EMG which shows axonal damage and polyradiculopathy in the legs (right grear than left), arms were normal. I am being followed by docs that are highly regarded in this area and practice at a large teaching hospital. Unfortunately what they have in smarts, they lack in people skills. Getting information from them is almost impossible. I ask a question, they tell me don't worry. Just plain vague.

I started around 1 year with electric like shocks in my rt hip, was told it was my arthritis. Then severe shooting pains in my back down the back of both legs with ankle weakness on the right and got tired when walking 6 months after that. I was told I needed a hip replacement.
3 months after that I get the ortho appt and By now I could not move my rt foot side to side and was tripping over it and I have fasciculations in my legs, can't do stairs without extreme difficulty. He told me I had MS or a brain tumor (but only after mri-ing everything from the waist down). So finally to a neuromuscular specialist who recognized foot drop, but it took over a month to get the appt. Good news is no MS or Brain Tumor, MND is "doubtful and unlikely" and I thank God for that.

My med history: Breast cancer and chemo 1996, breast cancer (new tumor not metastses) 2005 for which I received adriamycin, cytoxin and 12 cycles (yes that is a large dose) of taxatere. 2008 Graves disease, sever and out of control with 2 thyroid storms and free t3 levels over 1000. Very sick, had leg weakness, could not do stairs, fell, could not get out of a chair for 6 months. Finally had a total thyroidectomy in 2010. I have had 7 documented cases of hepes zoster in 10 yrs.

My questions: Isn't pain a sign of sensory neuropathy? I am told that I do not have CDIP because it did not show up in my spinal fluid or blood, is this an absolute?. MMN is ruled out because they say I have no sensory involvement and that it starts in the hands. Herpes Zoster was ruled out as it wa not in the spinal fluid, but I am being treated with Valtrex for 2 weeks. The only plan I am given is to have PT take valtrex and return in 4 weeks. Maybe then the doc will consider a trial of 2 doses of IvIg.

Meantime, I started losing my balance, but figured out it was from the AFO's I am trying to adjust to. I hope the gait training anf PT will help. I find that if I can do a heel toe gait, I am less fatigued when walking.

Please do not think I am wallowing in self pity, cause I am fine and adjusting well to the disabilities. It is just that when I ask my docs questions about the fasics (like what are they) or express that I am worried and anxious at times about what is happening to me, I got told "Why are you worried, you are the same as last month, you have nothing to be anxious about." Well.... I used to be able to walk unassisted and now I can't. When I was being worked up and was frightened by it all I was actually told by the other and this classic answer of the detacted doc, "anxiety is not a symptom of the disease, it is chemicals in your brains reacting, don't worry about the anxiety."

I still have the hip and back pain. I also would like to know if anyone else out there has motor neuropathy and how they are doing. I am 63 yrs old and a retired critical care, ED nurse. I am married and have a son.