pjm220
Active member
- Joined
- Apr 10, 2010
- Messages
- 47
- Reason
- PALS
- Diagnosis
- 08/2010
- Country
- US
- State
- IL
- City
- Chicago
Hello. I have no diagnosis, but many symptoms that are similar to ALS. My meeting with my neuro this week was very unsettling. It was our second appointment; the first one was 3 months ago. She told me that what I have is degenerative, there is no treatment, it isn't my muscles but maybe the muscles aren't getting the information that they need and she has no idea what it is.
Spasticity: what is it? Is it when my legs stiffen, either alone or when someone rubs my leg a certain way? Is it when I walk like Frankenstein? Does it come and go, or is it continual? Doc said I had no spasticity. But my legs get stiff, like cement, for short periods of time, in repetitive sequence.... usually when I am in bed at night and early in the am. Sometimes the stiffness goes into a spasm. Really stiff, so much that it almost hurts.
Muscle twitches under my skin: some can be seen, some not. She told me I didn't have them because she didn't see any on my face, and she looked for them. I have them all over my body now. Should they be always happening? She said they weren't happening because she didn't see any during the exam. My husband sees them all the time, on my face, legs, neck, back, thighs.....
I am now using a cane. If we go somewhere "out", I use a wheelchair so I don't get so tired. Drool has started to drip out of the corners of my mouth, because my lips are "soft". Talking is exhausting, and I sometimes choke on water or my saliva. Cigar smell and strong cooking smells have caused me to choke in the last 6 weeks, like I am breathing through my throat and it closes. I told the doctor, and she said that I still had a nose to breath out of, did I pass out?
Doctor wants to have a sphincter EMG done. I have yet to have an EMG at all. MRI, CT Scan, Neuropsychological, blood and chest x-ray all normal.
Is it me or the doctor? Is she right on?
Thanks for reading this. I appreciate any information that is offered.
Spasticity: what is it? Is it when my legs stiffen, either alone or when someone rubs my leg a certain way? Is it when I walk like Frankenstein? Does it come and go, or is it continual? Doc said I had no spasticity. But my legs get stiff, like cement, for short periods of time, in repetitive sequence.... usually when I am in bed at night and early in the am. Sometimes the stiffness goes into a spasm. Really stiff, so much that it almost hurts.
Muscle twitches under my skin: some can be seen, some not. She told me I didn't have them because she didn't see any on my face, and she looked for them. I have them all over my body now. Should they be always happening? She said they weren't happening because she didn't see any during the exam. My husband sees them all the time, on my face, legs, neck, back, thighs.....
I am now using a cane. If we go somewhere "out", I use a wheelchair so I don't get so tired. Drool has started to drip out of the corners of my mouth, because my lips are "soft". Talking is exhausting, and I sometimes choke on water or my saliva. Cigar smell and strong cooking smells have caused me to choke in the last 6 weeks, like I am breathing through my throat and it closes. I told the doctor, and she said that I still had a nose to breath out of, did I pass out?
Doctor wants to have a sphincter EMG done. I have yet to have an EMG at all. MRI, CT Scan, Neuropsychological, blood and chest x-ray all normal.
Is it me or the doctor? Is she right on?
Thanks for reading this. I appreciate any information that is offered.