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jennibf

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Doctor's office called and they found demyelination and some other junk but I asked about lesions and they said there were none, just demyelination so I asked about the PLS diagnosis and she said that there can be demyelination in PLS? Say what?

Anyone heard of this?

ARGH...I am frustrated today. I am tired of having parkinsonism symptoms and fascics and I want some CHEESE to go with my WHINE.

I go to the Cleveland Clinic in Cleveland, OH the first part of Nov. They (my docs) say it's the third best place for MND peeps.

:twisted::evil::oops::confused:
 
Jenni,

I'd like to know where the first 2 best places are for ALS peeps!

It seems to me I did hear that demylinating can take place in PLS but I couldn't tell you the source.

What kind of cheese would you like? I'm a Swiss cheese guy, myself!

Toodles!

P.S.
Where do you have fascics?
 
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i searched for some info on this.
there is not much and will try to find some more when i have time.
however i did find the info below which does state what i have said before that you can have minor lmn involvement in pls.
i know i do have minor lmn involvement after 10yrs with pls but i am not too worried about it.



Primary lateral sclerosis: clinical, neurophysiological, and magnetic resonance findings -- Kuipers-Upmeijer et al. 71 (5): 615 -- Journal of Neurology, Neurosurgery, and Psychiatry
 
Caroline,

Thanks for posting that link. I found it informative.

Kim
 
Kim,
My fascics are everywhere...UGH...more prominant lately in my right arm and leg and it is the left side that I have the most trouble with? I have fascics in my chin and one drink of wine makes me salivate way too much...very embarassing to talk, always afraid I'm going to spit on someone.
I'm in a better space today mentally.

Caroline,
Thank you for the link!

OH and my cardiologist said Mayo was in the top two but I cannot remember the other (another sign of demyelination, haha)
 
I think its typically begins with weakness and/or abnormal sensations of the legs and arms. It can also affect muscles of the chest, face and eyes. Although many cases are mild, some patients are virtually paralyzed. Breathing muscles may be so weakened that a machine is required to keep the patient alive. Many patients require an intensive care unit during the early course of their illness, especially if support of breathing with a machine is required.
 
Kim, I believe Johns Hopkins is the other of the "two".
 
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