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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.
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I see what happens when I don't stay up on the posts here.
For all of you who are doing well, how wonderful!
For those of you who aren't doing well I hope you get stronger and feeling better soon.
We have been dealing with the Noro Virus here. Poor David was the first to get it Friday and was in the ER twice for dehydration. Emily got it on Sunday and Dan started into on Tuesday, now I'm afraid I might be coming down with it.
My doctor wants me to have the Pompe blood test done as soon as everybody here is better so that we are not contagious anymore. We are trying not to go anywhere until we are all better and a few days have passed. Dan hasn't even gone to work this week.
I have done some research on Pompe Disease and it just doesn't seem to fit it feels like the doctors are just taking a shot in the dark to try and find an answer. I guess that's what I'm hoping for, that they have no basis to look into this, because this is the scariest thing so far to me that they have suggested.
I can't find enough information on it to know exactly what the late onset form of it would be but everything I have read says that it is slowly progressive. To me that doesn't fit with my weak spells. The symptoms just don't seem to fit. I don't understand why they are doing this test when it has to be sent to Duke University and is a $150 blood test.
Sorry I'm not trying to vent, I'm just worried and I can't even go and give the blood for it (all they want is a dried blood spot) until some time next week when nobody has been sick for at least three days. I also have no idea how long it will take to get the results of this test.
I hope everyone is well today.
Kristie