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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-31-2010, 03:14 PM
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Hey debra, I am interested in what they found out in your breathing tests for the MG. I did the same tests tho sadly I had to ask for them. It went great but the results werent taken as seriuosly as hoped as the the test they do to test the diaphragm was in their words questionable because I couldnt hold the pucker as I was supposed to. Well of course I couldnt as my mouth muslces are so weak just as others are when I am off the mestinon. So the amazing results I felt meaning my diaphgram actually moved at all were not counted. I went from about -50 without the mestinon to -90to-95 with it!!
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08-31-2010, 04:20 PM
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#22 | ||
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Hi Annie,
The breathing tests showed a mild abnormal lung function that was improved by 20% with mestinon and became in normal range. It was not repeatable though since I felt terrible and since we have a neuromuscular disorder, they said this happens all the time. . .they can't really say the test is valid since it's for COPD etc. We get too weak and cannot continue with testing. Also, my results would have been amazing but we missed my peak window. They tested me at 45 minutes after dosing and it turns out my peak its at 90 minutes. I know this because I was having trouble breathing with 28 respirations/minute that dropped to 12/min by 90 minutes on mestinon. I really wonder what my results could have been!! Your results sound impressive. . . .debra |
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08-31-2010, 04:28 PM
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#23 | ||
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oops, it was a lung ratio that showed a mild abnormality and the diaphragm function was abnormal and was improved by 20% with mestinon...
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09-08-2010, 09:52 PM
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to give you an idea, the AWP, the average wholesale price, is the price right now that(or was for years and years until now) that all companies get paid for a drug. Pharmacies, hospitals, who ever bills it to insurance companies, use the AWP. A 200ml(the big bottle) of Gamunex, AWP is $1944.00
Im a big boy, so I get 650 ml daily for 3 days. Thats around 7000 dollars worth of just gamunex daily. Now add in all the tubing, syringes, home nursing, secondary drugs like heparin, salines, its up near the 9000 dollar mark daily for my treatment. AS compared to people who just take prednisone, which costs around 2 cents per tablet. Generic mestinon is relatively inexpensive also. |
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09-10-2010, 07:08 PM
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Hi Artchick, I am not sure you had same tests as I. This what I had that was most revealing, a Negative Inspiratory force test or NIF. They have a low tech version done at bedside but in fully loaded hosptial pulmononary labs they have the chair in the bubble you sit in and they hook you up to tubes and a mouth piece that is atached to a computer and it is all very fine tuned.
And this is for measuring diaphragm and muscle strength for breathing and not just for COPD so is accurate for what we have. In January: first one was Peak NIF of -36 cm of water (before appointment) second was Peak NIF of -50 cm of water (after appointment and eating) after mestion Peak NIF of -91 cm of water !!!! and wow did I feel the difference here. I felt my diaphragm move! Normally I feel nothing there. Tests also done were FVC or forced vital capacity which increased 10% after the mestinon. Diffusion capacity was at 68% of predicted prior to mestinon. My lung volumes showed total lung capacity of 86% of predicted. Now my lung doc is the director of this lab as well as one of the senior doc at the teaching hospital I go to. But I have had these tests thru earlier lung docs so I know that you all can get them too. Brain has gone blank....so I gotta sign off. Hope this helps someone in some way. Annie59 |
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09-10-2010, 07:31 PM
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#26 | ||
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06-14-2011, 11:15 PM
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Annie, do you know about prednisonse longterm? Ive been on it for 2 years from actually a NEGATIVE spinal reaction to IVIG and now have systemic tendonitis and am wondering if its from vitamin deficiency from the steroids.
Any help woudl be appretiated.  Quote:
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Seroneg too
?
You still need to take it easy.
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