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Jdeaton0w

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Learn about ALS
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Ms
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Houston
Looking for a lady named lisa that's been diagnosed. Her als presented with arm pain and then weakness and atrophy of the shoulder. I've searched and searched I can't remember her user name.. thanks for anyone that knows..
 
Any advice?

Hi all... I've read a lot of posts on here so I know you all aren't doctors and I know my case doesn't present like usual als presents...

I have had twitches for about 3 years now that I can remember.. It used to be only now and then now it's occurring all day basically... I used to notice it in my left bicep and my right toe and arch of that foot.. now it's in my forehead, ears ( fluttering sounds like moth in ear ), and other places , I have pain in my left shoulder and a dead feeling in my rhomboid area that spread to my right side and in my arm pit and pectoral miscle... left deltoid and pectoral cramp whenever I try to use them.. the dead feeling is now around to my ribs and my back itches like crazy but no rash..

I have trouble swallowing, like my neck muscles feel dead too, not numb to the touch but like they aren't working properly.. I feel strained to just talk.. my voice is not as loud.. It comes and goes..

I also have paresthesia... rythymic vibration in my feet..

I can't say for sure I have atrophy yet but I think it.. It's probably from being too self aware at this point... doc s aren't very good at keeping patients calm.. insensitive is the word I'm looking for..

Ive had chest ct with contrast, head ct no contrast, xray, lyme test, routine blood work, rheumitory panel, lupus, and some more all clear... paid out of my pocket for all of this .. waiting on insurance for neurologist visit and mri...

Kind of worried though because when the dead making feeling I get in my thoracic area flares up I feel like it affects my breathing like my ribs won't expand..

Thanks for any ideas or advice... I'm sorry for dumping this on a forum where you all are knowingly living with als, when I don't have a diagnosis or even had an emg. Thanks for your patience
 
Mod note: Please keep to a single thread in the DIHALS subforum. Combined threads.
 
Re: Any advice?

Thanks for any ideas or advice... I'm sorry for dumping this on a forum where you all are knowingly living with als, when I don't have a diagnosis or even had an emg.

you also don't even have any ALS symptoms :)

Your doctor is the best and only person to keep working with on this non-specific set of things you are feeling. all the best
 
Ok, thanks.. I didn't mention the weakness I have, it's more of an unsteadiness, just leaning over my entire upper body shakes... all my joints crack. . I see so many post here with these same symptoms and never come back to say what was found out with them.. I definitely will...
 
Of course the reason they never come back is because they do not have ALS :)

You don't have weakness, please read the READ BEFORE POSTING thread as you truly are good to go mate.
 
Probably not, I was really just wanting to find the lisa person so I could read her stuff.. didn't really want to post but figured while I was here why not? I can't work but I can go fishing so that's what I'm going to do until I get to the correct specialists and can figure this out. I'm really here because a lot of those people habe the same symptoms as me.. trying to find some more tests I can do until I can see specialist. I doubt it's als but it's still possible.. thanks for your time.
 
And doc rushes me bc I have too many symptoms.. only doc I can get to see so I'm having to help myself a little
 
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