Old 07-01-2015, 10:08 AM #1 (permalink)
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Default Fvc

I know our disease is rare"but I'm really getting frustrated with the clinicians in my state. I went to the hospital yesterday to have my Spirometry test done. At least this time they had the scuba diver type mouthpiece, which greatly helped me produce a seal but they had no way to test me laying down. The room was big enough to have 15 reclining chairs or small beds but nothing but the machine and a chair. I offered to lay on the floor but they wouldn't let me. Anyway, good news is that my FVC was 85%. Then they did another "pressure" type test but the mouthpiece wouldn't fit on this device so all the air just leaked out of the corners of my mouth. I asked them, "have you not ever seen an als patient before?" and she said "yes, but we have to work with what we have". Oh well, IIWII.

Vince
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Old 07-01-2015, 11:16 AM #2 (permalink)
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Default Re: Fvc

VINCE: That's a crappy experience. But I'm really glad your FVC is good.
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Old 07-01-2015, 11:51 AM #3 (permalink)
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Would you consider traveling further? I think you are 250 miles from Duke for example
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Old 07-01-2015, 12:13 PM #4 (permalink)
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My wife and I were just discussing Duke yesterday. I think it might be worth the trip.
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Old 07-01-2015, 12:22 PM #5 (permalink)
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Default Re: Fvc

I think you would find it a totally different experience. Dr Bedlack is very into research and ALS advocacy. He is the driving force behind ALS untangled and he seems to think outside the box. He is trying to study reported cases of als reversals and he is doing a study on lunasin
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Old 07-01-2015, 12:48 PM #6 (permalink)
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My wife just found his website and wants us to go there she thinks he is one of the few trying to fix us and not just be on a death watch
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Old 07-01-2015, 03:13 PM #7 (permalink)
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Default Re: Fvc

Your # is good! I had my first VFC done yesterday. I'm at 74 sitting, 61 laying down. I will be receiving my cough assist machine soon. Has anyone improved their #s after doing the lung expansion exercises & if so how long did it take?
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Old 07-01-2015, 05:25 PM #8 (permalink)
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hey vince, i go over to UVA als clinic dr. burns this is a little closer to ya and they treat me well especially burns he's good and does not mind any and all questions. the 'TEAM's' the same as every where else i mean what are they to do really! good luck 1love chally
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Old 07-01-2015, 05:28 PM #9 (permalink)
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just curious why do more then half of my post go to moderate, is it the way i talk or the one finger typing. help me on this cause it's frustrating! chally
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Old 07-02-2015, 04:06 PM #10 (permalink)
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chally if you write dr and put the period straight after it will go to moderation

Vince I hope you can find someone who can do these tests properly. They are only numbers, but they also can help make good decisions early.
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Old 07-02-2015, 09:36 PM #11 (permalink)
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Did you go to CAMC in Charleston? There is an ALS clinic in Morgantown at Ruby. That is where Mom was diagnosed.

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Old 07-02-2015, 09:38 PM #12 (permalink)
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.................
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Old 07-02-2015, 11:26 PM #13 (permalink)
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Gil,

I went to Ruby for my diagnosis and als clinic. They wanted to schedule the spirometry test at Ruby, however I am 2.5 hours away from Morgantown so I requested that it be done at Camden Clark in Parkersburg, only 30 minutes from me.

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Old 07-02-2015, 11:35 PM #14 (permalink)
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Default Re: Fvc

Quote:
Originally Posted by Blue&Gold View Post
Gil,

I went to Ruby for my diagnosis and als clinic. They wanted to schedule the spirometry test at Ruby, however I am 2.5 hours away from Morgantown so I requested that it be done at Camden Clark in Parkersburg, only 30 minutes from me.

Vince
Hey, I sent you a private message...
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