Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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MaureenNY 11/02/2014

Hi Everyone,

So i am going through a rough patch, yes, I try not to call them esacerbations or dare i suggest crisis. But Ive partnered with the docs every step of the way so I dont feel like I am in any TRUE danger at the moment. Anyways, so they sent me from the office DIRECTLY to the pulmonolgoy dept at the hospital who did a function test.

Here is my question:

How bad is 63% ???

I know in HS that wasnt enough to pass a test but darn close. ha ha....

We have increased meds from 30 mg to 60 and IVIG is pending insurance approval so help is on the way.

Just wanting the input of the smartest group I know...

Stinks that everyone is out enjoying the weekend and I am in here focusing on

inhale... exhale.. inhale.. .exhale... you get the idea..

Thanks in advance for any input you have.. i am back to the doc tomorrow and Ill see what she says but I prefer your input sometimes..

M

deleted_user 11/02/2014

hey there..First off if it makes ya feel any better I am not out enjoying weekend either, in fact havent enjoyed one in ages due to infections cdiff, etc.....So we are together on that score...Very frustrating right?? second it sounds as though you are on top of things with the drs and are doing all the right things so I agree dont think you are in danger...I have to be honest I dont know if 63% is good or bad..Is that your oxygen level? So guess I wont be the smartest one of the group replies but wanted you to know Im sure here for support and hugs and feel your pain and want you to get better soon!! I know you will..Keep the faith and sure someone here will have answer to that question....So again support and hugs and feel better...heres hoping meds will help also...Good luck at docs tomorrow!!! Love jacki

HappyGuy007 11/02/2014

Hi Maureen, 63% in which phase of the test? On which test in particular? My Pulmo (!! LOL) , pointed out a score of 61% of functionality in a second assay of a kind of, "blowing out as hard as you can," type test... The second phase, as I understand it, is to test muscles once they have been fatigued a bit by the first. I clearly lost some functionality from first go round, to second. However, my Pulmo said that overall functionality was fine ATM, but that a drop below 50% in that 61% value would be cause for some action... Return in 6 mos... Spirometry, and Electrodiagnosis, are tests I don't have much confidence in, as I have written here ad nauseam. ....I had just taken 60 mg Mestinon 90 min before the test, and told the technician so. Dr. advised me not to take it next time... ??? Seems crazy to me... Will be like comparing an ocelot, to a house cat. Be well.............. HG007

MaureenNY 11/02/2014

HG007.. i got em all here.. fvc.. 61... fev1 59... dlco.. which he said was an important one was 63... so thats what i quoted. i dont have my last ones on hand bu ti can tell without looking there is a change.. but like i said.. taking more drugs and ivig on the horizon so.. the calvary is coming so to speak...

whats ATM? i don't see that on here?

M

HappyGuy007 11/02/2014

At the moment? As I remember my scores were somewhat higher, but not by much... He said I was OK (fine), FTM (for the moment)... Mo, just trying to cheer you up a bit......... Really want to see you get better.

limpnoodle 11/02/2014

Don't know either if that is bad or good, but the last one I had in July, I could barely exhale against pressure and scored 49%, to which my neuro assigned the word "horrible", and immediately ordered plasmapheresis and put me on Cellcept.
Hope you start improving soon. I know how miserable things can be. I am currently undergoing another round of plasmapheresis and things are looking up for me. So good to have doctors that are in your corner.

MaureenNY 11/02/2014

Thanks happy guy.. i am living with the FAKE IT TIL I MAKE IT PHILOSOPHY FOR NOW.. whats in a number.. i feel like as long as my scores are slightly above my age.. im winning.~~~

FTM.. ATM.. i got you.. lets hope tomorrow is a better day.. I spent the ENTIRE weekend in my house.. never left the couch yesterday.. story is that if you rest you get better.. didnt work.. so today i wandereed the house and played a few games of clue with my son.. (ms scarlett was at it again).. anyways.. lesson learned.. moderate activity is better for me.. than NO activitiy.. the couch is not my friend...

Thanks for the replys. I have a misc appointment tomorrow ill get some answers .. meanwhile..

breathe.. in .. out.. in.. out .. etcetcetc.. my mantra!

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