NeuroTalk Support Groups - Update On My Crazy Life!

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 (Post 513325)

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!