jb63
Distinguished member
- Joined
- Dec 13, 2011
- Messages
- 164
- Diagnosis
- 12/2011
- Country
- US
- State
- NY
- City
- Long Island
I would like to hear from others with this disease. I am in need of hopeful or positive input. I know this may be reaching to far. I know what I am facing and I am devastated. I am trying to hold it together for the sake of my husband who is in tears. I am 63 married with my only son at home with mild cp.
I received this diagnosed from a neuro doc with a good reputation who I went to see after the neuromuscular doc would not see me until my appt in Jan. This was after I called her in Oct. and told her I was only able to walk a few steps with my walker and it was very difficult. She has been following me since last April and told me I had motor neuopathy, each visit I was told I had "nothing to worry about," I did not have ALS, and and that I had no progression. I have a flaccid rt leg, bilateral footdrop, and leg weakness with atophy. I wonder what she meant by no progression? That it remained in my legs?
New doc got all my records and did an EMG. I saw him twice and he seems certain. In my favor now: Arms are neg but slightly weak, no face involvement. Prescribed Ritulek.
I still plan on seeing the neuromuscular doc in Jan. At this point I have nothing to lose.
I received this diagnosed from a neuro doc with a good reputation who I went to see after the neuromuscular doc would not see me until my appt in Jan. This was after I called her in Oct. and told her I was only able to walk a few steps with my walker and it was very difficult. She has been following me since last April and told me I had motor neuopathy, each visit I was told I had "nothing to worry about," I did not have ALS, and and that I had no progression. I have a flaccid rt leg, bilateral footdrop, and leg weakness with atophy. I wonder what she meant by no progression? That it remained in my legs?
New doc got all my records and did an EMG. I saw him twice and he seems certain. In my favor now: Arms are neg but slightly weak, no face involvement. Prescribed Ritulek.
I still plan on seeing the neuromuscular doc in Jan. At this point I have nothing to lose.