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Bosley22

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Learn about ALS
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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
 
Last edited:
Btw when I said mayo in December I meant 2013 not this past January. And I'll be 24 in October
 
Please do two things:

- read the sticky titled READ BEFORE POSTING

- edit your post into paragraphs so it's readable
 
"I can tell you right now you don't have it."

Ditto

Follow Greg's advice and read the stickies. Then get some help for your anxiety issues so you can live your life. You may have something going on but it's not ALS.
 
Goodness me, do you realise you said all that to people who have been through an EMG, have been through the diagnosis and are dying of this, or caring for the person they love who is dying from this? (do not answer, that is rhetorical)

Please take your anxiety to an appropriate place and learn some respect - YOU DO NOT HAVE ALS and YOU KNOW IT, just like highly qualified neurologists have told you.
 
Hello again,

I understand that everyone is experiencing the most difficult time of their lives and I am so so sorry that those here have to experience this horrific disease. You are all in my hearts every single day and I think about you all everyday and pray for the best and that it comes sooner rather than later. I just have one question and that is if everybody thinks the Cleveland Clinic is a good institution when it comes to ALS? Also whether or not anyone has any experience either personal, or word of mouth about them. Thank you all very much
 
Politely, I'll say this. I appreciate that you're afraid of having ALS. You don't have ALS.

If I had experience with the Cleveland Clinic and could answer your question, I wouldn't.

I hope you understand that you don't have ALS, and you're refusing to believe it when people tell you that you are clear.

Now then. Three of the people who responded to you have lost a spouse after a very long time of working very hard, day and night, to keep them comfortable while they were dying. They (and I) have come back to this community to help those who need our knowledge and support about ALS. You don't.

One of the people who responded to you is paralyzed and dying, and using extraordinary means to read and write. He works very hard just to respond and help others.

To ignore our advice and ask about Cleveland is two things: First, it's an insult. Second, you're asking dying people to do work for you, even though you don't need it.

So I need to ask you to have some respect, leave here, and go see you primary care MD to get your non-ALS problem fixed. You'll be much happier in life if you do that. And I do wish you well--just not here.
 
Please take your anxiety to an appropriate place and learn some respect - YOU DO NOT HAVE ALS and YOU KNOW IT, just like highly qualified neurologists have told you.

I must say ditto on this, Tillie hits the mark again. Health anxiety sucks, but what really, really sucks is those of us who have, or who love those who have ALS for real.

My husband and I discussed today how he would like to go at the end and how long he wants to deal with this disease, how far he wants to go. Every Single Person here is coping with a real life tragic situation, to one extent or another. Wherever we are in progression now, the end will be the same. Please take your 24 year old, ALS free self to a health anxiety site and leave us be, Thank you.
 
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