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ny1987

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Joined
Sep 10, 2014
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NY
City
Somers
I am a 27 yr old male.

My first symptom began just over 4 years ago, when I began to be unable to take a full breath. I now get out of breath easily and cannot take a deep breath even from a sitting position or when I yawn, and when I do things like blowing out candles or singing or anything, I run out of air much quicker than in the past. I've had chest xrays, asthma test, and a breathing test (I had about 90% FVC)

I then began (and still have) muscle twitches all over my body, cramps, etc. After a couple years and a clean EMG I wrote everything off to anxiety.

However, over the past 6 months some new things have happened which I cannot attribute to anxiety. I cannot fully empty my bladder, and am having difficult urinating and leaking urine (the muscle used to push the urine out is very weak) and I get muscle spasms in what feels like my uethra. I saw a urologist, who confirmed I was unable to empty my bladder as much as I should, but saw no issues otherwise (no inflamed prostate, etc)

I also have what may be atrophy in my left palm, and weird things going on in some of my fingers of my right hand (tips of two fingers dip down, and some knuckles are concave now). I have included pictures below.



symptoms breakdown

Cannot take full breath - get out of breath easily on exertion
Difficulty urinating/leaking urine - spasms in uethra
Muscle twitches everywhere
Potential atrophy in hands
Occasional buildup of saliva in mouth due to difficulty keeping up with swallowing it

Tests I have had

MRI of spine and head - head was clear, spine originally came back with lesions, they re-did it citing they thought they may be artifact and saw nothing the second time
Every blood test imaginable - everything normal in most recent tests, did have elevated Ck a few times
EMG - had one three years ago, and one a year and a half ago, both normal. Most recent they only did my right side
Urologist examination - verified I cannot empty bladder but did not see causes
Physical examination by doctors - all normal

Thanks
 
I will be charitable and assume you lost your log in to your previous user name hamdog multiple ids are not allowed so please only use this one going forward. To be blunt if you had respiratory onset ALS for all this time ( incredibly unlikely anyway) you would be long dead. You need a new urologist if you were not given any direction after the exam. If your physician does not see atrophy don't worry. It does not seem like ALS at all to me
 
I will be charitable and assume you lost your log in to your previous user name hamdog multiple ids are not allowed so please only use this one going forward. To be blunt if you had respiratory onset ALS for all this time ( incredibly unlikely anyway) you would be long dead. You need a new urologist if you were not given any direction after the exam. If your physician does not see atrophy don't worry. It does not seem like ALS at all to me

Yes I last posted on that ID probably two years ago and had no idea what username or password I had used...sorry for the multiple IDs. Thanks for the response.
 
Cannot take full breath - get out of breath easily on exertion--see a pulmonologist
Difficulty urinating/leaking urine - spasms in uethra--so did he give you Flowmax or Rapaflo or something?
Muscle twitches everywhere--absolutely not diagnostic of anything, but if they're everywhere it's not likely to be from ALS
Potential atrophy in hands--dents are not that unusual or meaningful
Occasional buildup of saliva in mouth due to difficulty keeping up with swallowing it--see an ENT

Does not sound like ALS or MND
 
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