Old 11-12-2017, 08:48 AM #1 (permalink)
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Default Neurologist check up

Hello folks, on Friday had my 6 month checkup with my neurologist, no progression that is two checkup in a row now, a year now with no progression. Made me and the neurologist happy.

Discussed removing the Peg but because I take my terrible tasting meds and vitamins with it I decided to keep it.

Next appointment is next May, hopefully with the same results.

I have had no improvements though, still canít talk and use a walker or wheelchair to get around.
Al
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Old 11-12-2017, 10:11 AM #2 (permalink)
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Default Re: Neurologist check up

Glad for your long plateau. That’s what most of us want, though hopefully before too much bad stuff sets in. Wishing you another stable 6 months.
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Old 11-12-2017, 10:33 AM #3 (permalink)
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Default Re: Neurologist check up

Congrats Firefighter on the awesome news!

hugs,

sue
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Old 11-12-2017, 01:12 PM #4 (permalink)
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Default Re: Neurologist check up

Congratulations Al! Do you use bipap at all yet? It is amazing how unpredictable this disease is. Wishing you another 6 months of plateau!
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Old 11-13-2017, 07:39 AM #5 (permalink)
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Default Re: Neurologist check up

No bipad, to tell you the truth, I donít know what a bipad is. The neurologist was quite surprised that I still sleep with one pillow.
Al
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Old 11-13-2017, 08:51 AM #6 (permalink)
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Default Re: Neurologist check up

Congrats. No progression is even better than slow progression !
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Old 11-13-2017, 01:09 PM #7 (permalink)
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Default Re: Neurologist check up

Quote:
Originally Posted by Firefighter58 View Post
No bipad, to tell you the truth, I donít know what a bipad is. The neurologist was quite surprised that I still sleep with one pillow.
Al
Great news, You are slow progression! BiPap will come as your breathing is affected. It is similar to Cpap but it allows for less resistance on exhaling. You can also bleed 02 into it.
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Old 11-13-2017, 05:59 PM #8 (permalink)
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Default Re: Neurologist check up

Al, That's the best news I've heard all day!!!!! I'm so happy for you.

There are cases out there where a PALS progression just stops. Keep taking the same supplements and eat whatever it is that you've been eating!
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Old 11-13-2017, 06:26 PM #9 (permalink)
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Default Re: Neurologist check up

Congratulations Al! That's fantastic news xo
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Old 11-14-2017, 10:30 AM #10 (permalink)
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Default Re: Neurologist check up

I still eat in the regular manner and eat and drink what ever I want. I use my Peg for meds and vitamins.
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