FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
11-15-2009, 08:54 AM | #11 | ||
|
|||
Junior Member
|
Quote:
My neurologist explained how the Mestinon works exactly the same way. I only take the allergy drops for my allergies. If they get out of hand I take Allegra when needed. The progression of this has been frightening at moments. When I saw the neuro in Oct. my mouth would drop after talking for about 10 minutes. Now it's maybe 5 and sometimes affects my tongue. I'm just wondering how far will this go (I'm sure that's everyones question). My arms and legs vary the most some days are bad (barely walking) and some days it's tolerable (wobbly). I hope I get answers soon too. I'm not sure I will ever adjust to this fully. When I use to workout (many years ago) I remember I loved to feel the burn but now it just irritates me. My family understands as do my close friends. I have a few who don't understand it fully even though I have tried to explain why I can't walk the mall. This has all happened so fast I guess they haven't adjusted either. |
||
Reply With Quote |
11-15-2009, 09:08 AM | #12 | ||
|
|||
Member
|
Hey Moni,
Welcome to the group! I haven't been feeling well for the past couple of days so I apologize for keeping this short. Everyone here is very supportive. Looking forward to hearing more from you. Take care. Hugs, Pat |
||
Reply With Quote |
"Thanks for this!" says: | Moni (11-15-2009) |
11-15-2009, 11:50 AM | #13 | ||
|
|||
Grand Magnate
|
Moni, I'm fiercely independent too, so I get the frustration.
One thing I forgot to say is that it's a very good idea to find a pulmonologist and fast. And if you can find one who has "privileges" at the closest hospital, that's great. No one wants to think they could go into a myasthenic crisis but it does happen. And those of us who like to "push" ourselves, are more prone to one. A pulmonologist can check out your baseline numbers (when you are doing okay) or see how badly you are doing. Neurologists can't do what they do. They are an important part of your MG "team." And they can do tests called MIP and MEP that specifically look at how weak your chest wall muscles are. If you are doing badly, they can do an arterial blood gas on you. And they can explain, if they're good, what can happen if you do go downhill. Knowing what could happen in MG is not to scare you. It's so you realize what the parameters of this disease are. So you won't push! Annie |
||
Reply With Quote |
11-15-2009, 11:56 AM | #14 | ||
|
|||
Junior Member
|
Quote:
Thanks for the info. I check to see if we have one in this area. |
||
Reply With Quote |
11-15-2009, 08:31 PM | #15 | ||
|
|||
Member
|
Quote:
Ally |
||
Reply With Quote |
11-15-2009, 09:24 PM | #16 | ||
|
|||
Junior Member
|
I also have this happen. The neuro that sent me to UT Southwestern treated me 8 years ago for a tremor (legs, arms, neck) they thought was MS. Turned out to be a horrible side effect from an anti depressant my PCP had put me on (needless to say I no longer take any of those). It took almost three months to get back to almost normal. When he saw me in September he said it looked like a residual effect from 8 years ago that will never go away (?). Most of the time now my muscles will usually give out before the tremor has a chance to come up. Although my neck will feel shaky and make my head tremor. Never have had my head drop. I usually lean back in chair for awhile when it starts this or lay down.
|
||
Reply With Quote |
11-15-2009, 09:50 PM | #17 | |||
|
||||
Member
|
Nice to meet you Moni !
__________________
Mary . |
|||
Reply With Quote |
11-16-2009, 01:47 PM | #18 | ||
|
|||
Member
|
Welcome to the group Moni. I experience the burning/achiness and trembling muscles after over use. A great group of people with a wealth of information. Take care ~ Melanie
|
||
Reply With Quote |
11-19-2009, 01:51 PM | #19 | |||
|
||||
Member
|
Hi, (((((Welcome Hugs)))))
I just wanted to welcome you, and please continue to post, and ask questions, share your experiences. They are very much welcomed. I'm sorry you have MG, but am glad you found us. Much Love Lizzie |
|||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
New member | New Member Introductions | |||
New member saying hello! | New Member Introductions | |||
New Member | New Member Introductions | |||
new member | New Member Introductions | |||
New member | New Member Introductions |