Weird Stuff Going On

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Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,597
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
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Central NC
Always, as you have written....

"....everytime I start trying to figure this on my own I get brought back here."

I'll bet you have been endlessly Dr. Googling,

*Here"s to Dr Google below....

Two in five Americans have falsely convinced themselves they have a serious disease, after turning to 'Dr Google' –
according to new research. Instead of alleviating concerns, 74 percent of those who have self-diagnosed online
say searching for their symptoms made them worry MORE about their health.

That may be due to the answers given by Dr Google, as the internet's medical advice was found by respondents
to be reliable less than 40 percent of the time.

*Key words.... "to be reliable less than 40 percent of the time."

Sixty-five percent of respondents who used the internet to self-diagnose themselves the results show typing your
symptoms into the search bar might do more harm than good.

Maybe if you continue with DR. Google you may stumble onto something.

We can't help you here.... period.
 

Nikki J

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Mar 22, 2012
Messages
8,431
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
We really do understand that it is difficult not to have answers. Your answers are not here though. Ultimately they will come from a doctor. We can’t diagnose you, we have addressed your ALS questions to the best of our abilities. If you need online support look into the undiagnosed illness support groups on Facebook You may not find people with your symptoms there either but they will be in the same boat of looking for answers and sympathetic
 
Joined
Nov 11, 2019
Messages
16
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Lost a loved one
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00/0000
Country
US
State
CA
City
El Segundo
Hey guys I’m back again , this has just been getting worse went to a rheumatologist and explained my symptoms to her , she didn’t think it was anything rheumatological , but she went over some recent bloodwork my endo has ordered and my carbon dioxide in my blood was 32 , I feel like this has been affecting my breathing lately especially when sleeping , since this whole thing started I’ve been snoring like a freight train . Nobody really suspects my diabetes because my a1cs are all with range (6.9) . My quad whenever I flex it feels like it’s about to cramp , my right foot feels weird and twitches all the time , my muscles are softer and have lost mass in my right arm and pec , went and saw a different neuro who suspected parsonage turner , he did an mrn of my brachial plexus and the mrn came back unremarkable , I’m so scared of what’s going on and so many doctors have told me I don’t know , I’ve been living my life as much as I can not taking any moment for granite, I feel like whatever this is is killing me
 

affected

Guru status reached
Joined
Apr 26, 2013
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05/2013
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OZ
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lala land
I think a forum or group for undiagnosed people is the best place for you as you don't have ALS symptoms.
I'm sorry you are still scared, but chasing ALS is not going to get you any answers. All the very best.
 

lgelb

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Country
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WA
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Seattle
1) Diabetic amyotrophy doesn't require uncontrolled diabetes, but would show up on EMG, as would Parsonage Turner/brachial neuritis. Your symptoms don't fit, either.

2) Diet and exercise seem like potential opportunities to modify whatever this is.

3) Still haven't heard any reason to suspect ALS, which is all we cover here. If your CO2 is high, a sleep study and/or pulmonary function testing might not go amiss. I would strongly advise not bouncing between neuros, but instead finding a really good internist who can help you sort this out.

4) Closing this thread because it's not helping you come to grips with not having ALS. All the best.

Best,
Laurie
 
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