POISCENTER
General Category => POIS Research => Topic started by: Disaster on February 01, 2016, 07:51:12 AM
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I contacted the Dr. running it in 2014. He said he would contact me as soon as its up and running. Haven't been on in a while and now I see they started it without me, which is upsetting. I have had pois over 20 years and suffer more than anyone I know from it. This sucks!
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Hi Disaster,
You can find update regarding the study in this thread: http://poiscenter.com/forums/index.php?topic=2086.msg17585#msg17585
As you may know research takes time, especially because of the many sanctions and permissions that the world of medical research requires. We all are waiting along with you to know the results.
Just out of interest why you think your POIS is worse than others? I also have a pretty bad case of POIS and from what I have read here there are quite a few who have both cognitive and physical symptoms which are pretty bad.
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Im not waiting for results. They said they would contact me back in September of 2014 so that I could participate in the study. I live in NJ so I am right near them. They never contacted me like the doctor said he would.
The symptoms I had 20 years ago have gotten progressively worse and for the last 5 years ago I am completely disabled by them. I am home bound and only go out for doctors appts. If I am pois-ing then I must stay in bed for a day or two hardly able to stand. In the last 5 years I have been disagosed with Sjogren's Syndrome, autonomic neuropathy and a bunch of dysautonomias. My main problems is breathing. And I have been to urologist, nephrologist, endochronoligist, 4 neurologists, 8 pulmonologists, 2 geneticists, ent, 4 gastroenterologist (i have ibs, gastroparesis and pancreatitis), and 6 cardiologist.
After POIS is get what almost everyone gets but balls feel like I have a 20lb weight tied to them (after they are numb for a day) (and yes I have had ultrasounds), my brain feels swollen, I can't walk on my feet because my veins are all puffed out and swollen and hard to walk on, i get extremely painful stomach pains, my eyes are swollen like glaucoma, i am too weak to get out of bed, my breathing gets worse, i am cranky as hell for a week, the veins in my inner thighs are sore, my back becomes fragile to the point I can throug it out my sneezing (my whole spine is inflamed and degenerative), my whole immune system is weak and I can get sick very easily. Then of course I get all the usual allergy/flu like feeling too. Im sure I am skipping over a lot like all my dysautonomia are much much worse and if you know about it, it is help
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Your condition does seem to be pretty bad.
I think you can contact the research team to see if you can still participate in the study, no harm in checking. I suppose that they could have missed inviting you for participation.
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Your condition does seem to be pretty bad.
I think you can contact the research team to see if you can still participate in the study, no harm in checking. I suppose that they could have missed inviting you for participation.
Hi, Joelawewence,
Well said and very nice post. :-)
Stef
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Stef, pretty bad would be an understatement. Extremely bad is more accurate. I contacted the nex doctor on the study via email. She asked if I wanted to participate. That was several days ago and I haven't heard back from her since. Maybe I will have to call them by phone to get anywhere..