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Old 05-22-2009, 04:41 AM #11
ConnieS ConnieS is offline
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Join Date: May 2009
Location: Sunny South
Posts: 210
15 yr Member
ConnieS ConnieS is offline
Member
 
Join Date: May 2009
Location: Sunny South
Posts: 210
15 yr Member
Talking Hihi Ally!

Wow, thanks so much for your encouragement Ally! =) This forum simply amazes me everytime i login. How has your week been? How's the diagnosis and tests coming along?

The problem with mine's that my ocular symptoms are not always present, sometimes it goes and comes within a week, so they're simply not convinced. My ex-neuro used to reply with "Oh so your mouth drooped. But you said its better now, so I think its alright to leave it." He kept replying with "just try to exercise more you know. It'll help." Its fruitless trying to explain to him as he maintains the its bad now, but as long as it doesn't get worse, you're fine. Think he feels that rolling around in a wheelchair's fun! Lol.. My bloodwork for AhCR came back -ve, he didn't do the MuSK test, and since I didn't want to see him again, I thought its fruitless asking him to do the MuSK test as I'd have to wait at least 10 weeks for the results again.

But luckily some traditional herbs specialists who were recommended to me saw me, and are quite convinced that its MG and they happen to know people overseas who are able to treat MG and reduce the symptoms to more than 80% of what it is before, simply by using natural herbs. So I'm gonna go and have a try at it, am flying off to see the doctor next wed. Will probably be gone for at least a mth, but if it works, I'll share it with all of you when I'm back!

Meanwhile, hope we all have a great weekend ahead!!!


Quote:
Originally Posted by bluesky View Post
Connie: I'm so surprised they're not doing more to move along a diagnosis for you. When I read your story (My Journey) I thought to myself, "well now she has much more typical symptoms of weakness and limb problems, she probably won't have much difficulty getting a diagnosis". So, I'm sorry to hear that they just have a wait and see attitude with you. I'd like to see these doctors go through these problems and sit back and wait and see what happens! It's such a ridiculous way of thinking, "your life will go by and go by and you will be scared to death and miss so much, but just relax and we'll see what happens". Huh?

I'm eager to see how your bloodwork comes back (I'm sure you are too!). I wonder if a positive blood test will motivate them (it hasn't helped me, but then nothing much shows up in the way of limb weakness with those 5 minute neurological exams).

Thanks for replying and encouraging me. I'm going to be following your story very closely!
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Old 05-22-2009, 05:09 AM #12
ConnieS ConnieS is offline
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Join Date: May 2009
Location: Sunny South
Posts: 210
15 yr Member
ConnieS ConnieS is offline
Member
 
Join Date: May 2009
Location: Sunny South
Posts: 210
15 yr Member
Default Yes Erin!

Well, like you mentioned, I too find it weird how doctors here are not bothered with pushing for a diagnosis or a test. I went through a crisis without being DX and its been the same since.

But think thats what brought us closer! Good doctors are tough to find nowadays and with MG its just more difficult. ITs totally underrated which is why so many actually suffer without being DX, which is just so terrible.

So thank God that you're all here to share with us your experiences so that we are armed with better information to challenge our neuros!


Quote:
Originally Posted by erinhermes View Post
WTH?!? I just do not get it! Why do we have to get so sick b/4 we are treated? When I first found this forum, a girl on here was so weak that she on a FEEDING/BREATHING tubes and still could not find an answer - and she was a nurse!

Granted, she no longer posts so I hope she was dx'ed and taken care of, but it is just wrong! We are made to believe that WE are crazy - we are SICK! We cannot take care of our families/ourselves and feel guilty enough about it without some snot nosed dr telling us we aren't ill.........

I went through years of being ill before I was dx'ed - and then it was almost too late! No one should have to suffer like that!

I'm sorry for venting - I just do not understand........


Erin
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