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Old 03-01-2013, 10:13 PM #6
bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
bny806 bny806 is offline
Member
 
Join Date: Nov 2011
Posts: 576
10 yr Member
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Hi Cmak, and welcome!

I am also not a confirmed diagnoses, but get IVIG for my mystery illness after I crashed and landed in the hospital.. (18 months or so ago now)

I have that throat closing sensation sometimes- as if the back of it has collapsed on the front of it... one night it got so bad after a busy day at work, that when I went to talk m y voice coudln't seem to make it out as it was obstructed by this collapse!!! It was terrifying!!! I had all over weakness and droopy face badly at that time.. I couldn't eat or drink without choking (so stupidly I didn't eat or drink much for a day or two until I got my IVIG).. and then I was normal again (well new normal)... It comes and goes.. but it is very anxiety provoking for sure!

As far as the depth perception stuff, my vision is double and just weird.. ghosting at times, and other times if I focus on something up close for a while it takes a while for me to get my eyes back when I look away and at something else

As far as the hot baths go - I will never forget before I completely crashed (or maybe while i was crashing) I took a shower and got out and coudln't do a thing.. I laid there like a lump of jello.. couldn't breathe, swallow, move or anything.. can't say I've taken a lot of hot showers since! Summers are fun!

I take plaquenil - they thought maybe sjogrens as well, as my markers were elevated, i have dry eyes and mouth.. I had horrid joint aches.. and it helped so much with energy and the aches.. until they backed me down to the maintence dose.. It's not as useful it seems then.. Benadryl makes me worse for sure though - all of my symptoms, and I look into a mirrior and it looks like my face has melted off (but again I have no concrete diagnosis)

What tests have they done, or are they scheduling you for? any other treatments? Do they think a myopathy or myositis is a possibility - since you have sjogrens? did they do a ck on you?
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