No prob......I know how frustrating it is to be HEARD by my docs.......in fact I was scheduled for surgery on March 27th to drain my sinuses and so on - I would not have made it, as I was hosp on March 14th for my big crisis........what a joke! Even my ENT wouldn'yt listen - said I wasn;t having problems swallowing after sticking a tube down my throat and checking it out - I was convinced I was crazy by the time I was dx'ed.....
You don't by any chance live in the San Antonio area, do you? B/c I do have a GREAT neuro who WILL listen..........
IV IG has also been wonderful.......I really love the way it makes me feel......
Do you have any other autoimmune diseases?
It must be so hard to take care of your kids while being so sick......I will really pray for you.....Do you have anyone who can help you out?
Being so sick that you have to crawl around is NOT an option.......you need help.....I wish to God that someone would take you seriously. I konw this sounds awful but if it were a MAN saying these things, they would be taken seriously.........but they all chalk it up to "nerves" or "depression" - it isn't!
I don't know what else to say but I am hoping and praying it doesn't tkae crisis to get your proper dx.........
Please feel free to contact me ANYTIME 24/7 @
erinhermes@hotmail.com
Erin
Quote:
Originally Posted by bluesky
HI Erin! Thanks for your reply. I feel like I already know you, cyber speaking, since I've been reading your posts for a while. 
It sounds like you've been pushed by this illness as far as anyone can and still be here. Yikes. I am wondering if I'll have to go into full blown crisis before I can get anyone to listen to me. Actually, before I'd even heard of mg I had what I think was a smaller crisis after surgury for a kidney stone. For 2 hours after I woke up I was suffocating and struggling to breath. I was freaking out! Everybody just kept saying, relax, you're anxious. I had to beg for oxygen which maybe wasn't the most helpful thing to do, knowing what I know now, but I clung to that stuff with every bit of my being. I remember thinking that the innate fear and air hunger was the worst feeling in the world. I can imagine then how awful it was for you. Terrible.
Thanks for your encouragement. You are right - I really need the drugs and treatment. Right now I'm barely crawling through each day and I'm desperate for some help. I'm a widow and have two kids to take care of. I really worry that this is not going to end well unless I can get someone to believe me so I will be able to put together some sort of life where I can work and be something resembling normal. It looks to me like I've either got to find a neuro who believes me without the symptoms all happening right there in the office, or I'm going to have to push myself toward crisis and hope someone recognizes what's going on before catastrophe hits. I hate the last option!!!
Thanks again for your encouragement and information. I'm going to keep that in mind with the next doctor I see. I just got very beaten down because I thought the positive blood results were my ticket to being listened to and taken seriously and it turns out that the positive results on paper and in books are as close to proof as you can get but in real life it's not working that way.
Anyway, thanks for the reply! You've recharged my determination batteries. |