[LucysFlower]

Hello All. I have been reading and researching this stuff, but I am at a standstill. Can anyone enlighten me about your own experiences with Myelopathy, or Spinal Cord Syndrome, or Post Polio Muscular Atrophy?? I have more upper motor neuron signs than lower, and I have a 30 year history of very slow progression. It is interesting that Post-Polio Syndrome is now listed with the motor neuron diseases.

However, over the past 2 years, I have more overall weakness, pain and muscle problems, and atrophy of my left thigh muscles is new. I am very stiff. Also, I am surprised that I am now have to limit activity with hands and arms, or cannot lift right arm sometimes. I have been to doctors, had testing, get the "dive-bomber" sound on my EMG in my left arm. It seems hard to track this down as to just what is going on. Years ago, wise neurologist said, "It is not time to know."

I have post-polio syndrome, but have not been diagnosed with any progressive motor diseases. I also have cervical spondylotic myelopathy, mild cerebral palsy and partial complex seizure disorder. I also have spasticity, clonus, hyper reflexes.

I'm thinking that it is the Myelopathy or Spinal Cord something, that is getting to me, as it feels like I have a knife in my spine. And all these years, I just go on with my life, and deal with it all. No paid meds or anything. There is the possiblity of Post-Polio Progressive Muscular Atrophy, I suppose, whatever.

As I have said, I am just curious about any similar experiences.

LaVerne
Midwest City, OK

[LucysFlower]

No replies. Nada. Maybe I have worded this wrong. I'm so alone in this.

How about: How do you cope with all the uncertainties of progressive motor neuron syndromes? And the pain, wow, that is a whole other subject. This stuff is like a time bomb. Regardless, I still do everything for myself. I just don't want to give up anything.

How do you deal with family members that don't get it, don't understand, don't have time to deal with this. My daughter wants me to move closer to her and her family, but then says, "Don't expect any help with the packing or moving."

How do you feel when insurance doctors say "We know you have something, we don't know what it is, but we don't think it is going to kill you." Or when one neurologist got something on the EMG, he kept checking the machine like it must be broke, then said, "You have vindicated yourself."

LaVerne

[Chemar]

Hi

this forum is not used as much as some of our others, so you may want to consider posting on either the Spinal forum
http://neurotalk.psychcentral.com/forum22.html
or
"General" health http://neurotalk.psychcentral.com/forum2.html

maybe members who read more there can offer some insights into your condition

all the best