Old 08-08-2015, 03:25 PM #16 (permalink)
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Default Re: Clinic visit

Damn spell check, I had to laugh myself.

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Old 08-08-2015, 04:54 PM #17 (permalink)
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How did the clinic visit go Neil?
I was thinking of you across the time zone differences xx
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Old 08-08-2015, 10:06 PM #18 (permalink)
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Default Re: Clinic visit

you made my day.

I can't cast stones at any one making typos now. But, rest assured that I am really not a stalker!

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Old 08-09-2015, 03:40 AM #19 (permalink)
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Default Re: Clinic visit

Quote:
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But, rest assured that I am really not a stalker!

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Steve, I checked with the Bears, they beg to differ!

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Old 08-09-2015, 11:25 AM #20 (permalink)
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Steve, I checked with the Bears, they beg to differ!

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Hmmmmmm. You have a point there

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Old 08-09-2015, 03:23 PM #21 (permalink)
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Default Re: Clinic visit

Well, the visit was pretty much as I anticipated. My FVC went from 60 to 51, and my arm and hand strength was down. Most disappointing, I am now below the FVC requirements for trials, and they are just starting some there.
It seems every muscle in my body started cramping when they did the strength tests. I feel like a train has run over me 2 days later.
I hope I start to recover some strength.
Some interesting info from the doctors:

How many of you have constant runny noses-like a perpetual allergy. probably contributes to mucus. When I mentioned this to her she said that many of her ALS patients tell her the same thing. Apparently the disease does much more than just kill off motor neurons.
Also my left foot often turns blue for a while. The neurologist said that a secondary effect of the neuron damage is that capillaries lose the ability to dilate or contract at the proper times. Probably why we feel so cold or hot.
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Old 08-09-2015, 03:31 PM #22 (permalink)
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Oh forgot to mention, got measured for a permobil M300 wheelchair and we got house that has bedroom on 1st floor.
Also, half of our big pear tree fell down on our house while we were in Houston, but fortunately didnt do more than take out a couple of shrubs and break a sprinkler head.
When we got home we found that a few of our neighbors has chainsawed the mess all up for us.
Funny, the HOA had given us a warning letter about a fine if we didnt trim the tree.
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Old 08-09-2015, 04:25 PM #23 (permalink)
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Default Re: Clinic visit

Thanks for updating us all Neil, sorry you were so worn out from the whole visit.

I hear you on being disappointed that you are below the criteria now for clinical trials, that really sucks.

I'm glad you have the pwc wheel rolling and got your pear tree pruned up so efficiently. That one did give me such a laugh after all the rest of your news.

Really interesting about the effect on capillaries as the muscles are being affected and it does make sense.

I hope you feel more recovered tomorrow
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Old 08-09-2015, 06:03 PM #24 (permalink)
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Neil, I also have the constant runny nose. I know I have said it before but Alka Seltzer 2x a day helps.
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Old 08-09-2015, 06:06 PM #25 (permalink)
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My mom had the runny nose. It is also common in dementia apparently
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Old 08-09-2015, 09:36 PM #26 (permalink)
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Sorry it wasn't better but at least it's over, I have one in Sept. Sorry swalker, you are not a stalker (at least I don't think so, lol)

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Old 08-10-2015, 05:01 AM #27 (permalink)
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Neil, there were a few positive outcomes from the clinic. Sorry though that there wasn't more positive news.
God bless, Janelle x
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Old 08-10-2015, 10:59 PM #28 (permalink)
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Neil, thanks for sharing the results from your clinic visit.

I am glad to hear your pulmonary result was still relatively high!

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Old 08-10-2015, 11:26 PM #29 (permalink)
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Default Re: Clinic visit

Likewise, my Mom has dementia and a constantly runny nose was probably her earliest symptom. It remains to this day. I myself have noticed a constantly runny nose for the past year or so, but I'm not sure if that related or coincidence.
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Old 08-11-2015, 01:00 AM #30 (permalink)
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Default Re: Clinic visit

Thanks for letting us know how your visit went, Neil. Seems like the several days before and after those clinic appointments are tough for most. That 60% clinical criterion is a real frustrating one. My husband's sitting right on that edge now. (But his diabetes precludes him from most anyway.)

Sorry numbers weren't better. Awesome neighbors--hope that provides some cheer. And hope you put that chair through it's paces when you get it, Neil. I think of you so often Neil, and watch for your posts here. Please keep letting us know how you are.
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