Dear Pat, Thanks so much for your encouragement!! =) This board has helped me a lot too, for its really a place where I can share all my thoughts and yet no one would say I'm crazy. =D

I know what you mean Connie, I love this place too! Take care of yourself and good luck with finding a new neuro. Things will get better soon!

Pat

Hi Connie,
I can't wait for you to get to a good, caring neuro. I HATE it when they pull this wait and see bit! For one thing, if it was their body I guarantee they wouldn't just wait and see! UUUUHHHH!!!! For another, there are conditions with your symptoms that if caught early enough and treated can be stopped from turning into something more serious and permanent!

I'm really concerned about two things in your post - Numbness and one sidedness. There are so many conditions that can cause these same symptoms. It sounds from the LP and MRI's they were looking at MS which would make sense, but there are many others as well - don't let them stop looking!!!

The first neuro I had sent me to a psych as well - he cracked me up. After I told him what "brought me" to him, he said " Oh, I see - they can't figure it out so they send you to me! You're not crazy! Just depressed with good reason with all that's going on with your health!" He was so tired of Neuros telling perfectly sane people that they had a mental problem causing their neuro symptoms. I loved him, and he reaffirmed what I already knew, but my family and friends needed to know it!

I'll be sending some strong, positive thoughts your way. Please keep us up to date on your new neuro, tests, and progress as well as how you're doing, ok?

Lots of Big Hugs and Loves to YOU,

Just checking in to see how you are today! I know how frustrating all this "hurry up and wait" business is.............and how dr's (especially specialists" have super huge egos..........I tell my docs all the time that it is not about their ego - it is about making me WELL again and if they have a problem with that, then they are the WRONG dr for me......it actually works...they are not used to someone calling them on their "tude" - LOL!

Let us know how are you doing when you have the time/energy!

Big hugs!
Erin

Hi Connie,

I just wanted to let you know that I totally feel for you when you say that you have to make yourself as sick as possible before seeing a neuro. I do exactly the same thing! As if being sick isn't bad enough, I feel like I have to make myself even worse. The only good side is that in my efforts to make myself sicker I've grown to know more about this disease I have. Unfortunately, most neuros just kind of dismiss the symptoms anyway, one by one. Still, I know now that squeezing my eye makes it droop as do hot showers, walking AND talking makes my breathing worse and will set me off sometimes for several days of fatigue, a couple of diaphragm exercises makes breathing worse, a couple of transverse abdominal muscles makes my stomach pop out to the point where I look 9 months pregnant and makes breathing harder, doing a few tricep exercises makes them weak and shaky and my arms will shake sometimes for the rest of the day, lying down when I'm really fatigued will make my oxygen saturation go down. And all that works unless it doesn't. Aaargh! This disease is so random!!!

I think Annie gave me this advice and I think it's really good: take as many pictures as you can. I still don't have a diagnosis, but I notice that docs seem to take me a little more seriously.

Anyway, I'm so sorry you have to go through this. Keep trying, keep trying, keep trying. That's what I tell myself, at any rate. I hope you find your answers soon!

hey all of u, thanks so much for the encouragement. =)

i cant type much now, am on a drip in e hospital i went to. the docs here are pretty confident of treating mg, but they just want to check if its really mg or something else. they've narrowed it down to 4 illnesses, namely mg, some thyroid thing, muscle dystrophy and one other which i can't quite recall. he's one of the top neurologists in this hospital, and he's mentioned that he's 99% if not 100% confident of fully treating mg. just have to pray that its mg cos the others aren't that easy to treat.

i'm having a tensilon test later on, so shall see whats the result. the docs here are really caring, so can feel that i'm in good hands. they mentioend that the tests i did in Singapore are all very surface tests, as in they're neither comprehensive nor detailed enough. so they have to redo quite a bit of tests... the neuro mentioned i have quite a bit of muscle wasting away on my chest, just below the collar bone. he says the two muscles there are practically gone. am quite surprised cos i hav not noticed it b4.

won't be able to check in too often as i'm warded in e hospital, but will check in whenever i can to hear from all of ya.

thanks so much for the support

Connie,
Hang in there young lady! We will keep you in our prayers and believe that the Doctors will find out what is going on with you. Keep your good spirits and know you are in our thoughts and prayers! Keep us informed when you can.
Bless you!
Simon

Hey Simon, thanks for the encouragement! Finally the doctors here are doing all they can to help me, and most prob's the tensilon test would b done later on today. They mentioned a muscle biopsy too, as my emg showed abnormal results, which they mentioned is different from what an emg of someone with mg would show. i have quite a bit of overlapping symptoms so they're doing all sorts of tests to be sure. i'll update all of you soon!

Connie,
Take care and keep us posted. Keep the faith!
Simon

Hey hon! I am sooooooooo glad to hear you are finally being treated PROPERLY! AMEN! That is such great news!

I know I say this over and over, but I have a feeling 09 is going to be our year! I FEEL it!

I bet you are so excited to finally be treated RIGHT! I hope it's MG, too b/c there are many other autoimmune dieases that are truly scary - I am Not down playing MG in any way - not @ all, but we can lead somewhat normal lives with meds! Plus, lifelong remission is POSSIBLE! Isn't that amazing?

Let us know how your tests go!

I will be praying for you!
Big hugs!
Erin