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How to Sign up for Pre-Testing for Clinical Trials
Posted: 30 September 2012 12:55 PM   [ Ignore ]  
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If you have Rheumatoid Arthritis or chronic endometriosis, this is thread to respond to if you are interested in participating in pre-treatment trials and/or treatment trials. If you can come to Texas between Nov 5 and Nov 16, please indicate so. If not, please let us know if you are interested in treatment trials only. More information can be found under “Articles and Handouts” (see this listed on the right hand side of the front page of the website). Thank you! smile Dr. Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 08 October 2012 01:03 PM   [ Ignore ]   [ # 1 ]  
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Hi Everyone, I believe I was able to circle back with everyone. Thank you! It looks like we are FULL for the pre-clinical testing for EDS/dysautonomia. I could use maybe one more M.S. patient and 1-2 Lyme disease patients, and maybe one more rheumatoid arthritis patient and one more endometriosis patient. If anyone in your family qualifies, could we consider them? As you know, there is a considerable amount of overlap in our conditions within our own families. Thank you so much, my friends! Anyone else with EDS/dysautonomia or not, I will continue to gather names and contact info for treatment trials, OK? Thank you so much!! This is getting exciting! smile Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 16 October 2012 06:38 PM   [ Ignore ]   [ # 2 ]  
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Well, I have a seronegative RA along with EDS III, Dysautonomia, POTS, fibromyalgia, chronic sensitization syndrome, Pseudo-Tumor Cerebri, Delta Granule Storage Pool Deficiency, pelvic congestion syndrome, Raynaud’s, Livedo Reticularis, Sjorgen’s, RLS, hyperkinetic circulation, extreme venous pooling, classic migraine syndrome, delayed sleep phase syndrome, vitamin deficiencies, gluten sensitivity, strabismus, blah, blah, blah. Much like everyone else here, if you can name it, I probably have it.

I signed up under RA just to be different and because it sounded like you might need more with this dx, but not sure if seronegative variety will do. Just t’row me over to the EDS side if necessary because I definitely want on this bus if there’s room for me.

Unfortunately, I’m quite bummed that I’m in Ohio and wouldn’t be able to travel, but I would SO love to participate in the trials so count me in if possible. I might be able to fly in once to do this, but sounds like you need people to come back several times and that might be a little more than I can handle.

I’m very fortunate to have a wonderful doctor that would do anything to help me. Will there be at least some tests that remote folks like me can have our physicians order then submit results to you to assist with your data collection?

Thanks for all you do!

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Posted: 17 October 2012 07:26 PM   [ Ignore ]   [ # 3 ]  
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Hi MissOSUfan, So smart of you to try to slide through under one of the co-morbid conditions!!! wink Hmmm, you’re seronegative, huh? That could be an issue… Do you have any relatives who are seropositive, perchance? wink Unfortunately, because the testing is very “cloak and dagger”, we can’t do the testing long distance… Well, if that doesn’t work out, no worries. We’ll get you covered by your numerous “brethren in illness”, OK? I’d be grateful to you for spreading the word, and any fund-raisers (or donations—I’m getting more blatant, now!) would be SO APPRECIATED!! Thank you, my friend, smile Diana

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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