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BlueandGold

Senior member
Joined
Feb 28, 2015
Messages
634
Reason
PALS
Diagnosis
04/2015
Country
US
State
WV
City
Sandyville
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
 
VINCE: That's a crappy experience. But I'm really glad your FVC is good.
 
Would you consider traveling further? I think you are 250 miles from Duke for example
 
My wife and I were just discussing Duke yesterday. I think it might be worth the trip.
 
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
 
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
 
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?
Kat
 
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
 
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
 
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.
 
.................
 
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
 
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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