from-joyce thompson--chiair-lupus EDS associations--ncc

October 28, 2011

Hi,

I had my computer fixed, or am hoping it is been done! I am sorry to anyone who

received any emails-i have not sent.

My computer was sending out weird mails to all contacts. Ive never delt with a

virus before.

I wonder if lupus is seperate from EDS? I also wonder if others have problems

regarding high lung pressure or plumonary hypertension and EDS? I was perscribed

plaquinal recently (for SLE) and am scared to take it. Does anyone have infor.

about this medication and connective tissue disease? Also i was perscribed

demeral and valiulm and a new reumatoligt told me it isnt good and i should try

to stop it.

Drs are so confusing, my other rumetoligist (who then said i dont need to

return) told me i dont have any reumatoligist issue but i have only primary

plumonary hypertension. I do show high plumonary pressure on echo and have

swollen hands joints and body pain and breathing symptoms.I have trispicud

prolapse and regurtation which i was told is from the lung problem.

All the drs i have dealt with or things i read i get very confused due to so

many various things i am told and the way it dosnt feel like i have any medical

backup (here) for anything.

I am still trying to keep my son who is 21 on state ins. and have a court date

for nov.8. He is ok but he needs some sort of medical connection who has at

least heard of chiari, even thought the dr he has seen is still like the same

deal where we dont get all the infor we should and infor. is left out.

Thanks,

Joyce ca

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