It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Neuromuscular Diseases Message Board


Neuromuscular Diseases Board Index


I went to the neuro yesterday and he said my EMG and Nerve conduction tests were normal. I cried! I just want to know what is going on. He said he cannot fit my problems into one particular disease but he acknowledges there is a big problem with my body. He is sending me to a neuromuscular disease specialist at UAB a world renowned research hospital. I don't know what to do!!! What do I expect there? Are they going to give me more drugs and no answers?:confused:
Dutchess ,

I was sent to a neuromuscular specialist at the Cleveland Clinic.Basically all the test that my neuro done was repeated,with better technology.Lots of blood work as where they look for muscle break down and enzyme counts.They only added one med.To be honest I didn't get to many answers,but when I left the clinic I knew what it wasn't and that was reassuring for me.

Toni
[QUOTE=nuffs3]Dutchess ,

I was sent to a neuromuscular specialist at the Cleveland Clinic.Basically all the test that my neuro done was repeated,with better technology.Lots of blood work as where they look for muscle break down and enzyme counts.They only added one med.To be honest I didn't get to many answers,but when I left the clinic I knew what it wasn't and that was reassuring for me.

Toni[/QUOTE]

Can you tell me all the medications that your are taking...including suplements?
I forgot to add flexeril to my list of meds and now they have doubled my nexium and added maalox four times a day for a suspected ulcer, due to all the other meds. I have been having spasms in my chest which they attribute to the disease (whatever it may be). Dr. called last night and they are sending me to a neuromuscular disease specialist at UAB. He is supposed to be world renowned. His name is Dr. O. Does anyone know what to expect? My doctor said that unfortunately in his 35 plus years of practicing medicine, all the cases that he has seen like mine is in young women my age and it has taken going to UAB to figure out the problem. They are still baffled by my ANA 1:1280 and my symptoms. The doctor said he cannot make them fit just one disease. He is pretty sure I have a combination. ANy clues>?
Dutchess,

When I seen my neuromuscular specialist it was at the cleveland clinic,they done a very extensive neurological exam it took about 45 minutes.They drew blood,11 viles and urine samples.They done several blood test,54 to be exact,they checked all enzymes,anything that would cause muscle problems.They done a deep muscle EMG/NCS,they bypass surface muscles and target the ones closer to the bones,it hurt like the dickens.They have MRI machines and Pet scans that are state of the art.These specialist are top notch and well worth the visits.I had all muscle disorders ruled out which was a blessing.
You could have 2 disorders at once.Have they ever done a lumbar puncture.This test will rule out 8 disorders.MS,lyme,lupus are a few.Don't be alarmed if they repeat test,this is standard protocal.This will be a well worth visit for you.It may not give you a DX,but it will tell you what its not.And that can be very well worth its weight in gold.Its very disappointing and a struggle not knowing whats wrong,but on the other hand its very reassuring what its not.

Toni





All times are GMT -7. The time now is 03:45 PM.





2018 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!