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icecreamlady

Active member
Joined
Jun 3, 2009
Messages
38
Reason
Learn about ALS
Diagnosis
06/2009
Country
US
State
Pa.
City
Beaver Falls
Hi.. I was diagnosed with PLS last week. I have had weakness in my upper body and pain in my legs, for over a year. I have stiff joints, and Fatigue.

I started to twitch in March, and lost my gag reflex in April. I seem to have a horse voice and keep clearing my throat. I also have memory problems. I'm a 45 year old wreck..LOL

Anyway , I went to all the doctors and finally eneded up going to a neurologist in Pittsburgh... he said I have PLS... my EMG was normal...

I have hyper reflexes too.... Im concerned, about the loss of gag reflex? has anyone else had this that has PLS?

Thanks!
 
I have Hyper Gag Reflex and also am Spastic , Started out Bulbar ,Hyper Reflexes ,choking issues now and then ,clearing the throat is due to not phlem but the throat muscles making the throat smaller so any liquid in there seems like its phlem But not . Im 64 had my disease for 9 yrs. now having another symptom Neuroglycopenia . Your Friend Geo
 
Thanks Geo! I am trying to take this all in... I have been told by friends that I should apply for SSDI. I haven't worked since April, I was having a really hard time with simple paper work and was having problems with balance. Does this take a long time to get after you apply?

I worry that with losing my gag reflex and twitching, it may turn into ALS... I guess time will tell.

Thanks...
 
When i applied i was told i had ALS probable so they hurry the paper work through 2-3 weeks . I was working a partime job and they had fired me bnecause of my illness saying i was a liability. My Attny made them hire me back and the EEOC also . But they just cut my hours back from 20-30 to 4 hrs per week .im not working for 4 hrs. the lady at SS office said you dont need them anyway . Take all your med records ,you'll have to make an appointment ,they help you fill out the paper work . Employers dont want a liability around . I didnt need a cane then and got around OK but now im glad i stay home . Im Mr. Mom now. LOL GEO
 
icecreamlady,

When I was first diagnosed it was pls. I applied for disability immediately. I had to wait 6 mos for it, however, I did get SSI until I got my disability.
 
Disability is SS . Same thing .Meaning when you get Dis/Soc.Sec this is the same as what you would get at age 65 when you would get SS .
Same O Same O LOL . Geo (ps) when i reach 65 i will get the same check . Only now it will be SS .
 
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