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 |
12-13-2010, 11:50 AM | #31 | ||
|
|||
Member
|
I will get back to respond to some of your other replies. I want to tell everyone though how much it means to me that you have all responded to me with so much compassion and caring.
An update on the Mestinon: I caved this morning and took 30 mg. I noticed that my arms were really weak and burning when I was holding the newspaper up to read. I also had a revelation that sort of put this in perspective for me. I'm not sure I can explain, but I'll try. OK, since I've been on the Mestinon (somewhere around 6 weeks I think), I haven't had that pure exhaustion or the feeling that I can't talk or breath. I have been able to do more than I was able to in the past. I think the doctor just messed with my mind. He made me doubt myself as to whether I'm really sick. I know that I am. I can go back and read my blog and see and remember how bad I was in the past. I don't want to take the chance of not being able to breath just to prove a point to this neuro who probably doesn't care anyway. I hope I've made some sense. It was a long night here. Thanks again. |
||
Reply With Quote |
12-13-2010, 11:26 PM | #32 | ||
|
|||
Grand Magnate
|
Shalynn, Do you have a medical alert card? If not, please consider putting one together. If your MG, or the "mystery" illness you have gets worse, you need to have basic information with you.
Name, emergency contact info, social security #, insurance numbers, doctor names and numbers, diseases and associated meds, etc. I also put info about drugs that could make MG worse. FYI. |
||
Reply With Quote |
12-13-2010, 11:46 PM | #33 | ||
|
|||
Member
|
Yes Shaylun perfect sense. I feel I was just where you are at a couple times. I started out strong and clear but as the tests came back negative and it became clear that my clear symtpms and mestinon use made no case for them things changed. They did where me down. I thought maybe one more neuro will be the one. That sure hasnt been the case. Or the pulmo who got so scared about my health after I did the pulm stress test resulting in him getting me right in to Mayo.
Much of the time I DO know that "I know my body." You are the expert in your body. I hope you can hold on to that nomatter what. Annie59 Quote:
|
||
Reply With Quote |
"Thanks for this!" says: | shalynn (12-14-2010) |
12-14-2010, 03:27 PM | #34 | ||||||||||||
|
|||||||||||||
Member
|
Annie,
Thank you for your kind words and compassion. Quote:
Quote:
Quote:
Quote:
Quote:
Quote:
Quote:
Quote:
Quote:
Quote:
Quote:
Quote:
I appreciate the time that you took to write all of this. You are helping me so much! |
||||||||||||
Reply With Quote |
"Thanks for this!" says: | AnnieB3 (12-14-2010) |
12-14-2010, 03:56 PM | #35 | ||
|
|||
Member
|
Shari,
I'm sooo glad you caved. That doesn't show weakness at all, a person can't struggle with an unknown illness for several years and be called weak. It shows a very strong, empowered person who only wants answers, so she can continue to fight the good fight!! I can't begin to tell you how worried about you I was the last few days!! Hope your starting to feel a little stronger, Rachel
__________________
You never know how STRONG you are, until being STRONG is the only choice you have!
|
||
Reply With Quote |
12-14-2010, 07:20 PM | #36 | ||||
|
|||||
Member
|
[QUOTE=alice md;725263]
Quote:
Quote:
Quote:
Quote:
Thanks so much for your insight and for taking the time to respond to my post. |
||||
Reply With Quote |
12-14-2010, 07:24 PM | #37 | ||
|
|||
Member
|
Quote:
My neuro up in Indy is a good doctor too. I'm just going to stick with her. I guess I was getting too greedy to think I could find a neuro here in my home town that would help me. So was your SFEMG positive? Merry Christmas to you too! Thanks again. |
||
Reply With Quote |
12-14-2010, 07:26 PM | #38 | ||
|
|||
Member
|
Quote:
TTYL! |
||
Reply With Quote |
12-16-2010, 06:59 PM | #39 | ||
|
|||
Member
|
Thank you Shalynn for this message. Spending so so much time alone it is as to be expected too much and the lid blows. If it didnt I'd end up with a heart attack.
This is one of the hardest things I have ever gone thru. When I was young and going thru a divorce it was horrible esp for my kids but I think when younger I was less aware. I came from a somewhat tough place as a kid so I didnt expect much. I guess maybe I have come a far distance in that I have little understanding of a person who goes into a field to care for people that are ill and treat them poorly if not out right disgracefully! Annie59 Quote:
|
||
Reply With Quote |
"Thanks for this!" says: | shalynn (12-17-2010) |
12-17-2010, 02:09 AM | #40 | |||
|
||||
Member
|
Quote:
by the way, when you come to think about it, what's so bad about being a doctor shopper? if you want to buy a car, you will probably seek the best car-dealer, learn as much as you can about the different cars you can afford, consult friends and family what is the best, safest, most reliable car. why shouldn't you do do the same, when it comes to your own health. would anyone judge you for not buying the first car from the first car-dealer (who you could clearly sense was trying to sell you a cheap car at a ridiculously high price)? no, they would say how smart you are for not falling into his trap. so why should you be ready to "buy" the diagnosis a non-caring arrogant physician is trying to "sell" you or the treatment he has pulled out of his sleeve without thinking about the potential risks? I can tell you that are some excellent and even outstanding physicians out there, and some I would not even buy a used car from. and many in-between. so why shouldn't you try to get the best? and I think you should be looking for a neuro (or other physicians as needed) that will work with you, to find the best way to manage your illness. what matters is not the diagnosis, but the actual management. finding the right diagnosis is only one step in that process, and clearly not enough. |
|||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
First Doctor's Visit | Peripheral Neuropathy | |||
Humiliating Experience | Multiple Sclerosis |