longroad
Member
- Joined
- Mar 22, 2009
- Messages
- 10
- Reason
- Learn about ALS
- Country
- US
- State
- NC
- City
- raleigh
Here is my story. I have kept a journal for years of my symptoms and found this helpful when new issues would manifest. For the past year I have had several different diagnosis. There has been enzyeme defiency because of low B 12, Folic Acid, Iron, Vit D and severe anemia. When all these were up to normal levels I was thought to have to Pompe's disease or some other metabolic muscle disorder, ALS or myasthenia gravis. My first EMG was normal. I was then referred to Duke for a second opinion. When I first went to Duke I was tested for genetic disorders like Stiffman Syndrome and Paraneoplastic Syndrome because of the rippling muscle spams I had just started having. I have been told at least 5 different diagnosis in the past year alone and it has sent my head spinning and not knowing what to believe except that my symptoms are getting worse. Going to Duke has at least given me hope to finding out exactly what is wrong with me. Just remember it's your health, not theirs and if your doctor won't listen to you go to another one. There are diseases and disorders in the human body that many doctor's will never see in their lifetime, that doesn't mean they don't exist.