BeautifulWreck
Member
- Joined
- Mar 29, 2011
- Messages
- 24
- Reason
- Learn about ALS
- Country
- US
- State
- AL
- City
- Gulf Coast
My husband had his appt today with the neurologist who specializes in brain cancer and also neuro-muscular disorders. He was green but we liked him and he seem to be very thorough. He had his ducks in a row and had reviewed everything before he did his exam and spoke to us.
He believes that J has Parsonage-Turner Syndrome. There are certain things about it that mimic or act like ALS, but it has some other distinct symptoms that my husband is having. The dr says he can't be a 100% sure and mentioned another neuro-muscular disorder but the name escapes me at this very moment. (tired) He will be monitored over the year and our next appt is in six weeks. He says he should have a full recovery in 1 to 2 years as long as there is no relapse. There really is no treatment but he recommended some physical therapy. He said he could continue to go to the gym but he had to work with a PT and he warned him about causing damage to the arm or slowing the healing process.
The Dr. did not think a brain MRI was needed at this time. Hubby did make large donation to the lab.
One of the interesting things that happened at the appts he said was that he likes to do his own EMGs. (our last one was done at a separate clinic) He said that it is subjective and he likes to know for himself what is going on with his patient. He also thought they should have tested all 4 limbs. After the exam he said he would let the current EMG stand and that if anything changed in the coming months J would have to do another one.
Kim
He believes that J has Parsonage-Turner Syndrome. There are certain things about it that mimic or act like ALS, but it has some other distinct symptoms that my husband is having. The dr says he can't be a 100% sure and mentioned another neuro-muscular disorder but the name escapes me at this very moment. (tired) He will be monitored over the year and our next appt is in six weeks. He says he should have a full recovery in 1 to 2 years as long as there is no relapse. There really is no treatment but he recommended some physical therapy. He said he could continue to go to the gym but he had to work with a PT and he warned him about causing damage to the arm or slowing the healing process.
The Dr. did not think a brain MRI was needed at this time. Hubby did make large donation to the lab.
One of the interesting things that happened at the appts he said was that he likes to do his own EMGs. (our last one was done at a separate clinic) He said that it is subjective and he likes to know for himself what is going on with his patient. He also thought they should have tested all 4 limbs. After the exam he said he would let the current EMG stand and that if anything changed in the coming months J would have to do another one.
Kim
