 |
Senior Member
|
|
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
|
|
|
Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
|
Hi Rumpled!
So you were "re-diagnosed" with MG? WTH? What is WRONG with your docs? I don't see why on earth they ever changed your dx to begin with!
I wonder how many of us have parents that have MG symptoms as well......my mom does, though she won't see a dr - her fear of needles is worse than mine - go figure!
I wish you had a dr that actually cared! I don't understand why you have to go through all of this........don't they realize how dangerous the choking is? How weak you are?
As for your mom, 1/2 a pill ain't gonna do squat! Anyone in their right mind would know that! I was on 480 mgs of mestinon and still had a crisis and ended up in ICU - sometimes it does the trick, most of the time we need more meds - sadly - sigh...........
I have missed you! I was so glad to see that you posted! There are so many new people on the forum now!
I hope you FINALLY get the help you need! I hope your mom feels better as well!
Please let meknow how you are when you have the time/energy!
Big, big hugs!
Erin
Quote:
Originally Posted by rumpled
I am still around. lurking mostly. I went to a new neuro recently that gave me my MG diagnosis "back" (gee, thanks) and did some more fancy blood work that I was all normal with... hah...
I am going next month for a set of swallowing tests - the choking is really getting to me as I seem to choke more and more now, sometimes daily now. Going for the esophogal manomomatary and other tests - but I don't know what I said to the doc as he is doing the long version as well as other tests. Ugh.
Oddly, my mom got diagnosed with MG due to her wonky eyes, they gave her one (1) blood test, the achr test and a script to take 1/2 a mestinon pill every 4 hours. The blood test came back normal and the mestinon only gave her the runs - and since the dose was not high enough to help her eyes (duh!), they decided they do not know if she has MG now. She is off the pills and still cannot see.
I asked her to ask her doctors for the complete set of bloodwork at least, and to discuss more tests and she was mystified... and I said have you not paid any attention to anything that has happened to me in the past 2 years? tests, muscle biopsy, CT, EMG, SFEMG, etc? I guess not. I feel so...loved... She is in IL and I am in NJ so I guess once I hang up, she forgets everything.
I got a pair of tabby kittens. They were abandoned in a construction site - so they are keeping me busy.
|
__________________
Erin
.
|