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Have not posted in quite a while, mainly because I still don't have a diagnosis. Probably pls or hsp.....not that it makes much difference. I'm thinking pls as I have upper extremity involvement. Anyway, my question is this. I have for the past three months bee experiencing facial spasm or...

Interesting thread......although I don't know why the reluctance to post the name I will respect that wish. I can seen why they don't give it....it is moderately expensive and only looks for umn disease. That does not mean one won't show a dirty emg in this 5 year time fragments so why bother...

Well,gosh..."the incidence of PLS is what.....towards 1 in two million. If you take into account the amount of people who wear metal frame glasses who don't have disease........factorin people with perfect eyesight who do have the disease and then count those who wear plastic glasses and have...

Btw.....thank you for the replies.....it's nice not being alone.

I was thinking maybe I was being a bit of a diva. Spoke today with friend who attends same ALS clinic and we are both of the opinion the Drs. at our clinic are there to collect data. We are there for them not them for us. Just whining I guess....after all there is really nothing to be done...

Just curious how other people's check up go. Had mine last week. Was kind of expecting an examination of some sort. All I did is answer guest ions while he typed into computer from across the room. Then he said you should consider baclofen pump and left. Is this a typical exam or am I just...

I certainly can agree with you. Nothing aggravates me more than jumping through insurance hoops only to be denied by some youngster behind a desk who a: knows nothing about your situation. B: has never been sick. C: gets all his experience from a rulebook. I work for a company where we get...

Yep. The Heart so wanting The body unwilling Today at least, the heart not big enough. And so we take stock, a measure so to say Our cup of courage seems so low. Still we know, replenishment will come From some source as yet unknown. And we wait For that knock upon the door. That's how I see it.

I'm similar to Tillie. Get them multiple times per day. Especially when eating or drinking. Sometimes only one hiccup......sometimes more. Thinking diaphragm spasm. Will likely not report as a symptom as don't feel like fighting with doc about if I really get them or not.

Retaining water might be right as I am putting on weight but don't eat much. Also last checkup showed decrease in kidney function. Never connected the dots I guess. Your new doc and I didn't really hit it off either. I never found peace of mind till I went to the Mayo to be honest. Now I go...