momofsixkids60
Distinguished member
- Joined
- Sep 25, 2010
- Messages
- 314
- Diagnosis
- 06/2011
- Country
- US
- State
- in the
- City
- somewhere
When I was 25, I was diagnosed with paramyotonia congenita (A form of MD). The symptoms fit (at the time) for what I was having. Now almost 24 years later, I started having new problems; ie: My neck became frozen close to my shoulder and I was unable to use my arm for almost 6 months. It took 8 months and 3 doctors to help me. I had an MRI of the cervical area (negative), bloodwork that shows high muscle enzymes, an abnormal EMG with NCS, negative for stiff mans syndrome (anti-gad and anti-ampiphysin), and negative for Parkinson's Disease (was put on sinemet with no change). I have been on flexeril 10mg 3x and baclofen 20mg 4x. After the EMG, both hands have started with a jerking motion (not a tremor) and I have constant muscle spasms in the backs of my thighs and calves. I also am having problems walking up stairs and doing every day activities. I am scheduled for another MRI of the neck and will be going for another appt. the end of October. When I look up PC, I realize many of the symptoms do not fit; but PLS or ALS do. What questions should I be asking and what tests should I request? If anyone can help, I would appreciate it!