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terryscott

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Apr 24, 2015
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Learn about ALS
Country
US
State
oregon
City
Albany
Hi to all, my name is Terry I haven't been diagnosed yet. I'm into it about 14 months. Not sure what's going on yet. Doctors are confusing and seem to not know much.I'have fisciculations in three muscle groups with pretty severe muscle loss. Normal emg is confusing. Can't get diagnosed wether it ALS FBS MND. I've tried to research on my own. Seems like you all know more than Doctors. Mine tells me not to worry. It's hard not to when there's so much contradiction out there.
 
I don't see a question here but here is my advice. Read the sticky (,you did not I know because you posted in the wrong place) see a neuromuscular physician if you have not yet. Listen to their advice and know that in neurology answers can take a long time. The longer it is not obviously ALS the better
Idle curiosity do the doctors see the muscle loss ( as in commenting on muscle wasting) ?
 
If I read your post correctly, you had a normal EMG, have twitches all around, and muscle "loss" but none of your muscles are paralyzed, limp or useless after 14 months of twitches.

Sounds like you have a problem of twitching, but no problem with paralysis. As Nikki says, read the Sticky Post at the top of this sub-forum to learn why you shouldn't worry about twitching.

I'd forget about ALS if I were you. The hallmark sign of ALS is a paralyzed, limp and useless hand or foot. No sense worrying about death if your real problem is twitching.
 
Thank you, I guess I have a lot of new things going on with my body I don't understand and I can't get strait answers from either doctor. All I've heard from them is"I don't know what's causing that" it gets scary and I guess I think the worst and research on my own. I apologize for posting in wrong forum thanks for the info
 
Thank you Nikki, I've seen a neurologist but wasn't much help. And they are aware of muscle loss. Where it started in my shoulder muscle is completely gone. Thanks again I'll see if I can get in the right place.
 
If you saw a regular neurologist you need a neuromuscular specialist. If you are seeing one already as I said sometimes it takes time and there are not always answers. I do understand somewhat. I have had some strange things happen on my journey and when I have asked the answer is sometimes I don't know. And my doctor is one who gives second and third opinions routinely
 
If you have actually lost shoulder muscle and that was the site of onset, you could have the flail arm subtype, but that wouldn't explain the normal EMG.

You're ~70 miles from Portland -- go to OHSU.
 
I to am confused my dad has has been diagnosed first with CBGD then it was classical parkinson's then when the parkinson's meds didn't work they did an EMG and said it looks like ALS so now we have been seeing an ALS doctor and today at my dads appointment all the doctors were very confused and said that this doesn't look like ALS but the doctor said for diagnosis reasons we will stick with ALS I understand that the doctors are confused but when do we just give up? most of my family has given up and they say leave it alone it is what it is but I can't help but think there is something else. My dad is a complete quadriplegic this has happened in less than one year but he swallows fine and breaths fine then today when we were at his ALS clinic appointment after they examined my dad you tell they were so confused in fax my dads ALS doctor said that he wants my dad to see the parkinson's doctor again but we have already been turned away from Mayo clinic parkinsons clinic because they said it is ALS
please help I am falling apart i know a for sure diagnosis is hard but this is just to much uncertainty
 
Mary, if he went from "normal" to quadriplegic in < one year, it's hard to see how Parkinson's could explain that. What hospital clinics has your dad been to? I know we have members in your area and hopefully they can give you leads. I agree, you shouldn't be turfed back and forth between services, so you may not yet be at the right institution.

Also, I think this needs its own thread...next time, if you click the "new thread" button near the top, it will be easier for people to see and respond to your message.
 
I don't know how this works my family is falling apart my dad was being seen at the Mayo clinic in Scottsdale Arizona and is currently being seen at the Gregory Fulton ALS clinic at St. Josephs his ALS doctor is Ladha
 
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