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How to Sign up for Pre-Testing for Clinical Trials
Posted: 30 September 2012 12:53 PM   [ Ignore ]  
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If you have EDS (or joint hypermobility) with dysautonomia (some may say “POTS”), and/or Multiple Sclerosis, 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 Oct.8 and Oct. 19, 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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Posted: 30 September 2012 04:23 PM   [ Ignore ]   [ # 1 ]  
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One question that wasn’t answered on the “Initial Schedule & Instructions” page, how many hours or days is the testing going to take? Can we fly in and out the same day, for instance (save on a hotel expense.. those flying in are already going to have to rent a car, etc.).

I am interested, just can’t give a 100% for sure till I speak to my husband about this. I also wonder if the “few questions” might disqualify me anyway (such as are there any meds we might be on that would disqualify us, or previous treatments, such as CCSVI venoplasty/stent(s)?)

Thanks for this opportunity Dr. Diana!
~jerri

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Posted: 30 September 2012 06:02 PM   [ Ignore ]   [ # 2 ]  
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I am interested in treatment trials. Wish I could fly to TX for pre-treatment as well. On paper I have joint hypermobility.

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Posted: 30 September 2012 10:03 PM   [ Ignore ]   [ # 3 ]  
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I would love to be in your trials but i am not able to fly there for the pre testing. Please put me on your list for trials. I was diagnosed in May of this year with Classical Type Ehlers Danlos Syndrome and have many pots symptoms.

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Posted: 30 September 2012 11:06 PM   [ Ignore ]   [ # 4 ]  
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ourfullhouse - 30 September 2012 04:23 PM

One question that wasn’t answered on the “Initial Schedule & Instructions” page, how many hours or days is the testing going to take? Can we fly in and out the same day, for instance (save on a hotel expense.. those flying in are already going to have to rent a car, etc.).

I am interested, just can’t give a 100% for sure till I speak to my husband about this. I also wonder if the “few questions” might disqualify me anyway (such as are there any meds we might be on that would disqualify us, or previous treatments, such as CCSVI venoplasty/stent(s)?)

Thanks for this opportunity Dr. Diana!
~jerri

Wow, Jerri, you are FAST! I was going to put up the vid tomorrow (and the financials). The vid explains it will take about a half of a day. For EDS/MS, I don’t think there is any medication or treatment (such as angioplasty) that would hide this result, but some meds make the levels lower. We’ll pick the ‘low hanging fruit’ for the first few, I think.  Can you remind me—were you responsive to Zyrtec, at all? That may help…

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Posted: 01 October 2012 12:49 AM   [ Ignore ]   [ # 5 ]  
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Yes, we can come to Texas for pre-testing between Oct. 8, 2012 and Oct. 19, 2012.  I am interested in my son, my daughter and maybe myself participating, if you think that is possible.  If not, my son really needs to be one of the five for the pretesting.  He fits your descriptions exactly. We have his head circumferences, he does have increased intracranial pressure( cause unknown)  He has POTS, hyperflexability, he has had paralysis while laying flat and it scares him.  We have several MRIs Pet Scans, (show lack of uptake in cerebellum and no known cause)  We can bring those CDs, if you want as well.  Can’t wait for trial to start. Thank you, for all of your work and dedicated efforts to help people.

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Posted: 01 October 2012 01:12 PM   [ Ignore ]   [ # 6 ]  
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Wow, Jerri, you are FAST! I was going to put up the vid tomorrow (and the financials). The vid explains it will take about a half of a day. For EDS/MS, I don’t think there is any medication or treatment (such as angioplasty) that would hide this result, but some meds make the levels lower. We’ll pick the ‘low hanging fruit’ for the first few, I think.  Can you remind me—were you responsive to Zyrtec, at all? That may help…

Dr. Diana I tried Zyrtec, but it made me so tired and more fatigued than I already was and loopy that I couldn’t stay on it. I switched to Claritin and keep on the Zantac daily.

I just watched the vid and feel a little confused. If this is “clinical trial pre-testing” and those who participate will be at the front of the line once the clinical trial gets the green light, will EVERYONE who participates,eventually, in the clinical trial, have to have this pre-testing? How does the pre-testing fit in the picture of the clinical trial?

I guess what I am asking is what might it gain me/us that are out of state and would be totally scraping to get the money together to come to Texas for this, besides being at the front of the list to start the clinical trial(s)? My husband is supportive of me trying to get out there, but we need to weigh the pro’s and the con’s so to speak.

Anything you can share that will help us with this decision is appreciated.
~jerri
Oregon

 

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Posted: 02 October 2012 06:41 AM   [ Ignore ]   [ # 7 ]  
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Hi Dr. Diana, I finally figured out how to register on your forum, lol!  I am very interested on this clinical trial.  My doctor is at his wits ends, and does not know what else to do with me.  I live in Houston, so I will be able to make it to your area easily.  I am available from Oct 9th to the 13th.  Let me know what I need to do next, thanks smile

                -Sarah Friedner (potsiemommy on youtube)

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Posted: 02 October 2012 06:53 AM   [ Ignore ]   [ # 8 ]  
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Oh, and I forgot to mention that mt daughter who is 7 was just Dx’d with POTS, but she may be to young to participate I am assuming.  So far we have just increased her fluids and she is on Pepcid which is helping alot.  I suspect she had mcas as well.

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Posted: 02 October 2012 11:33 AM   [ Ignore ]   [ # 9 ]  
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I will be posting this elsewhere too, but thought this was a good place to start.
I have a site on Cafe Press where I sell EDS related things. It’s a work in progress and I need to update it but I am going to be donating 100% of MY proceeds to Dr. Diana for her ongoing costs and research.
If you have a request for ANY design, EDS or not, let me know and I will be happy to add it to the site. http://www.cafepress.com/stryderslist
Keep in mind, proceeds for these type of sites are nominal, but any little bit will help.
email me directly if you have a request:
.(JavaScript must be enabled to view this email address)

Anj

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Posted: 02 October 2012 04:57 PM   [ Ignore ]   [ # 10 ]  
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Hi.  I just have a few questions, so I can figure out if it is worth it to fly in from Canada for the pre-testing.

1.  Is this the POTS/dysautonomia clinical trial (I am asking because I see that a lot of ‘others’ can enter as well that do not have POTS?  Or perhaps you are running 3 different trials?  For instance, the EDS/MS group will be for dysautonomia/POTS and the other groups will have different testing?
2.  If you do the pre-testing, are you guaranteed entry into the clinical trial?
3.  I am in Canada, and I am wondering if it might be cheaper to have the pre-testing blood work done in my own city and pay for it myself.  Would the cost of the blood work be less than flying out there and would this be an acceptable way to participate in the pre-testing?  OR, if you need the blood, could it be drawn here and purolated to you at my cost?  I already have Fundus Images.   
3.  Can you be guaranteed entry into the clinical trial if you are unable to participate in the pre-testing?
4.  I assume the 1/2 day is for the pre-testing?  How long will the clinical trial run for (need to add up hotel costs, etc.)? 
5.  Is the clinical trial in the same place as the pre-testing (need to add up flight costs)?

Thanks,
Michelle (MJ)

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Posted: 02 October 2012 06:17 PM   [ Ignore ]   [ # 11 ]  
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stryderslist2 - 02 October 2012 11:33 AM

I will be posting this elsewhere too, but thought this was a good place to start.
I have a site on Cafe Press where I sell EDS related things. It’s a work in progress and I need to update it but I am going to be donating 100% of MY proceeds to Dr. Diana for her ongoing costs and research.
If you have a request for ANY design, EDS or not, let me know and I will be happy to add it to the site. http://www.cafepress.com/stryderslist
Keep in mind, proceeds for these type of sites are nominal, but any little bit will help.
email me directly if you have a request:
.(JavaScript must be enabled to view this email address)

Anj

Anj, you ROCK. I can’t thank you enough. I’m emailing you with a few thoughts (to include our brothers and sisters with other invisible illnesses), but I can’t tell you what this means to have your support. BIG hug, Diana

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Posted: 02 October 2012 09:46 PM   [ Ignore ]   [ # 12 ]  
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Hi Diana,
I live in the UK, so it’s too far to travel - can we still participate in any way?
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

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Posted: 04 October 2012 09:47 AM   [ Ignore ]   [ # 13 ]  
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I’m interested!

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Posted: 05 October 2012 12:01 AM   [ Ignore ]   [ # 14 ]  
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I am available and in Dallas! I’ve been diagnosed with EDS and “POTS.” I also have Anemia, Gastroparesis, and Vitamin D deficiency. I’d also love to volunteer and help out with anything you may need. I’m self-employed in the music industry so I’m brainstorming event fundraising ideas. Email me and let’s make this happen!

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Posted: 05 October 2012 12:26 PM   [ Ignore ]   [ # 15 ]  
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Hi Diana,

I emailed you with my information.  I guess I’ve gotta start somewhere in the planning process - or potential planning process.

I am interested and think I can pull off the trip.  I’ve been brainstorming.

Thanks.  PS.  If you have any bloodwork that you’d like drawn in advance, let me know and I’ll TRY MY BEST to do so.  I think I’m due for some bloodwork anyway and I’ll throw in extra tubes if I can.  Not my decision but I figured I’d ask you in case it would both:  be helpful and i am able.

Thanks again.

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Ehlers Danlos Syndrome, Fibromyalgia, Cardiomyopathy and other heart abnormalities, IBS, Neuropathy, Osteoarthritis, Hypothyroidism, TMJ (bilateral disk replacement w/autologous fat transplant), Asthma, Chronic sinusitis (remediated by successful FESS), Reversed Cervical Lordosis, Spondylosis, Kyphosis, Thrombophlebitis, CFS, and it’s probable that much has slipped my mind.  I haven’t been diagnosed with Dysautonomia but, personally, feel certain that this is playing a part in daily struggles

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