Bosley22
New member
- Joined
- Sep 29, 2016
- Messages
- 5
- Reason
- Learn about ALS
- Country
- US
- State
- PA
- City
- Pittsburgh
Hello everyone,
My name is Chad and I'm 23 years old. I have no history of ALS in the family but for four years going on five in February have had muscle twitching cramps and tremors. I went to the Mayo Clinic in Rochester in October of 2013 and again in December for my heart issue and had an emg, brain MRI, and some blood tests. I saw a neuromuscular guy there that I didn't really care for and he told me I had nothing wrong with me even though I have hypereeflexia in both legs. It's worse on my left side however.
I ignored the symptoms for two years but this past January my symptoms got so bad I went to the Cleveland clinic since it's closer to where I now live and saw the head ALS doctor Dr Erik pioro. He was the guy that diagnosed joost the rugby player and the NFL player Tim Shaw. I complained to him of atrophy in my right shoulder that I noticed as my shoulder felt weak and was way smaller than my left. He "appreciated" it and I about started to cry in his office but he told me no you don't have ALS but let's order and emg so you can calm down. I cried and said I was too scared to know the results and he said then don't do it. I can tell you right now you don't have it. He said he's diagnosed close to 2,000 cases of it. He said at my age it's gotta be way less than one in a million odds. He didn't call my shoulder atrophy but a loss of "bulk on the deltoid ridge"..... whatever that means. I also had a positive tromners sign but no Hoffmann or anything else. Just very brisk reflexes again. But he said they're all symmetrical. I continue to obsess and I feel my weakness is now in my right Hand and leg too.
I saw him again this past April and told him I felt I was getting worse and again offered the emg but I again declined out of fear of there being a bad result. He agreed as he felt even if something was off it might freak me out even if It wasn't something terrible. I'm now trying to get into Hopkins and waiting on an appointment but does anyone have any experience with pioro and Cleveland clinic? I saw a member said they missed his and West Virginia picked it up. I am having a very hard time writing and my hand feels week but then It'll get better if I don't use it. Same with my right shoulder. All my issues seem to be on my right side however I have had twitching all over my scalp for four years as well. Any ideas or help
God bless,
Chad
My name is Chad and I'm 23 years old. I have no history of ALS in the family but for four years going on five in February have had muscle twitching cramps and tremors. I went to the Mayo Clinic in Rochester in October of 2013 and again in December for my heart issue and had an emg, brain MRI, and some blood tests. I saw a neuromuscular guy there that I didn't really care for and he told me I had nothing wrong with me even though I have hypereeflexia in both legs. It's worse on my left side however.
I ignored the symptoms for two years but this past January my symptoms got so bad I went to the Cleveland clinic since it's closer to where I now live and saw the head ALS doctor Dr Erik pioro. He was the guy that diagnosed joost the rugby player and the NFL player Tim Shaw. I complained to him of atrophy in my right shoulder that I noticed as my shoulder felt weak and was way smaller than my left. He "appreciated" it and I about started to cry in his office but he told me no you don't have ALS but let's order and emg so you can calm down. I cried and said I was too scared to know the results and he said then don't do it. I can tell you right now you don't have it. He said he's diagnosed close to 2,000 cases of it. He said at my age it's gotta be way less than one in a million odds. He didn't call my shoulder atrophy but a loss of "bulk on the deltoid ridge"..... whatever that means. I also had a positive tromners sign but no Hoffmann or anything else. Just very brisk reflexes again. But he said they're all symmetrical. I continue to obsess and I feel my weakness is now in my right Hand and leg too.
I saw him again this past April and told him I felt I was getting worse and again offered the emg but I again declined out of fear of there being a bad result. He agreed as he felt even if something was off it might freak me out even if It wasn't something terrible. I'm now trying to get into Hopkins and waiting on an appointment but does anyone have any experience with pioro and Cleveland clinic? I saw a member said they missed his and West Virginia picked it up. I am having a very hard time writing and my hand feels week but then It'll get better if I don't use it. Same with my right shoulder. All my issues seem to be on my right side however I have had twitching all over my scalp for four years as well. Any ideas or help
God bless,
Chad
Last edited: