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How to Sign up for Pre-Testing for Clinical Trials
Posted: 06 October 2012 08:40 PM   [ Ignore ]   [ # 31 ]  
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laurassummername - 06 October 2012 01:44 PM

Hi Diana!

I will be there Sunday thru Wednesday.  Which day do you want me?

Laura G

Sending you an email, Hon! 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: 08 October 2012 01:00 PM   [ Ignore ]   [ # 32 ]  
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Dr. Diana - 06 October 2012 01:31 PM
Barbara - 02 October 2012 09:46 PM

Hi Diana,
I live in the UK, so it’s too far to travel - can we still participate in any way?
Regards
Barbara
(UK)

Hi Barb, you have been wonderful, helping me with questions that pop up occasionally. Thank you SO MUCH!  At this point, if you know of any of our “brothers and sisters” with rheumatoid arthritis, Lyme disease or M.S., I’d be so grateful if you could shoot them this way! Oh, and always, fund-raisers would be awesome… Big hug, Diana

Ok, fundraisers, I’m on it. Can we still be part of the Treatment Trials ?

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Posted: 08 October 2012 01:01 PM   [ Ignore ]   [ # 33 ]  
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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. 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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Posted: 09 October 2012 12:05 AM   [ Ignore ]   [ # 34 ]  
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Put me down for treatment trials.

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Posted: 09 October 2012 06:27 PM   [ Ignore ]   [ # 35 ]  
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Put me down for trials. Likely my son also.

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Posted: 09 October 2012 09:42 PM   [ Ignore ]   [ # 36 ]  
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Please put me down for treatment trials.

THANKS for all you do!

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Posted: 10 October 2012 05:13 PM   [ Ignore ]   [ # 37 ]  
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footprints001 - 10 October 2012 01:10 AM

There are risks involved in pre-treatment trials. It’s significant that you should be aware of possible side effects.

Hi footprints001, You may be confusing “treatment trials” with “pre-treatment trials”. HUGE difference. In the “pre-treatment” testing, we will ask patients to complete a questionnaire, we will be taking fundus photos (pictures of the back of your eyes, just like any good eye exam would cover), and depending on what we find, we will be taking a vial of blood (by a phlebotomist, my friend!). The biggest risk I see would be the chance of an auto accident on the way to the office! smile Are you a patient, BTW? Don’t hesitate to ask any other questions about risks, etc. I will say, though, in case you missed it, that we already have all of the EDS/dysautonmia patients we can handle. We would like to see another chronic Lyme, perhaps rheumatoid arthritis, a couple of folks with endometriosis, and I may be able to take one more M.S. patient. Thanks! smile

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Posted: 11 November 2012 10:32 AM   [ Ignore ]   [ # 38 ]  
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Dr. Diana, I am very interested in all of this, but i’m confused. Is the pre trial testing over? I am willing and ready to do anything. I have been diagnosed with POTS, have been told I have EDS (by Dr. Grub, and am now suffering with some mysterious, constant nausea. Doctors can’t decide what it is (said it was crohns, now say IBS, possible gastroparesis).

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Posted: 08 January 2013 06:16 PM   [ Ignore ]   [ # 39 ]  
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rdavidson - 11 November 2012 10:32 AM

Dr. Diana, I am very interested in all of this, but i’m confused. Is the pre trial testing over? I am willing and ready to do anything. I have been diagnosed with POTS, have been told I have EDS (by Dr. Grub, and am now suffering with some mysterious, constant nausea. Doctors can’t decide what it is (said it was crohns, now say IBS, possible gastroparesis).

I don’t wish to alarm you but I know from personal experience that subtle pressure on the brainstem can also be a cause of nausea, a Philadelphia Collar should help reduce this (if this is the cause) until you can find a more permanent solution.

It’s all trial and error I’m afraid but if I were you, I’d avoid looking down (raise your work to eye level whenever you can) and sit down to do things, this should help the POTS too.
Regards
Barbara
(UK)

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Posted: 09 January 2013 10:44 AM   [ Ignore ]   [ # 40 ]  
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rdavidson - 11 November 2012 10:32 AM

Dr. Diana, I am very interested in all of this, but i’m confused. Is the pre trial testing over? I am willing and ready to do anything. I have been diagnosed with POTS, have been told I have EDS (by Dr. Grub, and am now suffering with some mysterious, constant nausea. Doctors can’t decide what it is (said it was crohns, now say IBS, possible gastroparesis).

Hi rdavidson, yes, the pre-clinical trial testing is over (unless the team needs more tests. There is one I’d kind of like to run, but cost may be prohibitive. Constant nausea! My son and I dealt with that FOREVER. Do you have any symptoms of hydrocephalus? Our nausea went away when we took the pressure off of our brains and brain stems with Diamox. (Not seeing or knowing you, I don’t know if that is the source of your problems, though. We were checked for parasites and other lovelies, too.) I also went through IBS from Hades—I’m working on getting relief to you soon. If you lean toward diarrhea, you may want to consider zyrtec/zantac. That got rid of my 8 WEEKS of HORRIBLE diarrhea (running to the bathroom after just sipping water… Running to the bathroom maybe 25 times a day. Ugh.). It was likely a GI mast cell invasion for me. 48 hours later, it stopped. Then I went right into gastroparesis and constipation again. Good grief. I believe I have that figured out, and will be (God willing) bringing that to you soon. I don’t take Zantac any more, unless I get diarrhea (almost never). I hope that helps! If I can test us for one other thing, I’ll holler, OK? Hang in, my friend…

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Posted: 09 January 2013 10:52 AM   [ Ignore ]   [ # 41 ]  
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Barbara - 08 January 2013 06:16 PM
rdavidson - 11 November 2012 10:32 AM

Dr. Diana, I am very interested in all of this, but i’m confused. Is the pre trial testing over? I am willing and ready to do anything. I have been diagnosed with POTS, have been told I have EDS (by Dr. Grub, and am now suffering with some mysterious, constant nausea. Doctors can’t decide what it is (said it was crohns, now say IBS, possible gastroparesis).

I don’t wish to alarm you but I know from personal experience that subtle pressure on the brainstem can also be a cause of nausea, a Philadelphia Collar should help reduce this (if this is the cause) until you can find a more permanent solution.

It’s all trial and error I’m afraid but if I were you, I’d avoid looking down (raise your work to eye level whenever you can) and sit down to do things, this should help the POTS too.
Regards
Barbara
(UK)

YES!! I couldn’t look down for 3 years! I wore an Aspen collar, but I was blessed to not need that anymore after being on Diamox. My MRI’s indicated too much CSF in the subarachnoid space above the brain AND in the cerebromedullary cisterns around the brain stem. My collars now just collect dust (ditto with my son). I hear this from so many of us! I remember Dr. Naz McDonald explaining that it looked like our brains were SINKING. I think they may be pushed down just enough to cause our Chiari-type symptoms and inability to look down. The radiologist showed me where it looked like the cisterns were overly full, causing ectasia (bulging) and causing some spinal cord atrophy. Yikes. After 2 years, I only need Diamox rarely (yeah!), and I still don’t need the collar any more. When it was bad, just as Barb recommended, I had to have everything at eye level. Even then, it was hard… Where IS my duct tape? wink

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Posted: 12 January 2013 09:08 PM   [ Ignore ]   [ # 42 ]  
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As far as I understand, the problem with having EDS/Hypermobility, or any disorder that impairs the production of collagen is this:-

You see, there’s no strong boney junction where your head meets your neck, it’s all held on by ligaments (albeit many) so, if you have EDS/Hypermobility with it’s poor collagen production, your ligaments are not quite up to standard, so the joint is not as tight as it should be. Many symptoms can manifest because of abnormal movement in this area.

If you have the added misfortune of having an underlying chiari-type anatomy, this compounds the problem, generating more symptoms.
Regards
Barbara
(UK)

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Posted: 25 March 2013 09:36 PM   [ Ignore ]   [ # 43 ]  
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Hi Diana,
I was wondering if you were still taking people for treatment trials?

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