I am interested in treatment trials. Wish I could fly to TX for pre-treatment as well. On paper I have joint hypermobility.
Hi Jewels, I’ll get you down as interested in treatment trials, OK? Can you tell me if you have dysautonomia (“POTS”), too? I’ll email you for your contact info, etc., OK? We will move things along as quickly as possible, OK? Hang in, my friend. Diana
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.
Thanks so much, EdenRose! I’ll email you with a couple of questions and get your contact info, OK? I think we’re about covered for the pretreatment trial part, so no worries. We’ll move as fast as we can for the treatment trials, OK? Hang in, Diana
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.
Hi onliner, your family sounds like ours—my daughter, son and I are all affected—my son likely the worst. I know that paralysis only too well. I assume that occurs when he lies on his back? I think ALL of us would be smart to raise the heads of our beds by a few inches, if you haven’t already. He may do better if he sleeps on his side, too, if he can help it. It sounds like you didn’t get to see Part 2 of The Driscoll Theory? (I had to take it down—bad guys using my own research to prey on us with treatment I disagree with. Crazy, I know, but trying to look out for “the herd”!). In it, I described how we can develop hydrocephalus very easily. Is he able to take Diamox? All three of us in my family had to go on it, but amazingly, are now able to go OFF of it. I wasn’t expecting that, but what great news. Did you and your kids try Zyrtec, BTW? Many of us respond almost immediately to that. It’s not a cure-all, but it got my son back to school (in 2 weeks) after being too sick to even be tutored at home for THREE YEARS. I SO hope it can be another block to get you by until I can push us into treatment trials. Please stay in touch via the forum, OK? Thank you for popping on. Big hug, Diana
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.
Hi Jerri, I understand your questions and concern. At this point, I would NOT scrape together your savings for the pre-clinical trial testing, OK? I think we’ve got you covered on that! I can’t say with CERTAINTY until all testing results are in, but there is a very good chance that the same tests will be needed in the patients for the testing trials (hence the carrot, if you will). Pre-testing will help me focus on the majority of patients who fit the profile I am looking for. As you likely know, there are many causes of EDS and dysautonomia, some of us are misdiagnosed, etc. The pre-testing separates out the minority of patients who would not respond to this treatment. The pre-testing will also help confirm my suspicions, and solidify the treatment plans. Now, having said that, save your money, Honey, and you can still benefit from the results, OK? Big hug, Diana
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
-Sarah Friedner (potsiemommy on youtube)
SARAH!! It is so good to see you here! It’s like having a rock star visit! (My friends, potsiemommy has an awesome YouTube channel. Check it out!). I will email you, Sarah, OK? How did I not know you are in Texas? Diana
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.
Oh, Sarah, in case you missed it, did you raise the head of your daughter’s bed a few inches (and yours)? That may help. It broke my heart when I heard that she was affected, too (my son was hit at age 8). Did she ever get to try Zyrtec, BTW? Something to try until we can get the info out from the trials. Hang in, my friend, answers are forth-coming. Promise! Diana
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.
Anj, you are wonderful. Thank you so much for your efforts!!! I LOVE what you’ve done so far, and you are RIGHT. EVERY LITTLE BIT HELPS. Because NIH funding is so difficult to get (and takes SO LONG to get!), if all of us patients pull together, we can do this. Anything you all can do to help with costs would be greatly appreciated. One easily forgotten way to support the research is by going through the store at Prettyill.com and just click on any item to enter Amazon through that portal. Amazon will donate 6% of whatever you would normally spend back to Prettyill. Cool? Thank you so much, everyone. And Anj? Your efforts make my heart swell. Some days it feels like us against the world, you know? Your support and helpmakes it worth the struggles. BIG hug, Diana
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)?
Hi MJ, Great questions! I’ll simplify it a bit for you. Yes, you are right. We are running slightly different tests on all of these conditions, but are lumping EDS and POTS (or “dysautonomia”) together, as EDS generally leads to dysautonomia. Without dysautonomia, most EDS patients are not feeling “sick”, and aren’t particularly interested in trials. As far as coming out here, or not, I would skip it if I were you, my friend. We’ve pretty much things covered on the pre-clinical trials in EDS/dysautonomia, any way, and will expedite the treatment trials. I will put you down as “interested” in treatment trials, and when that time comes, with all details and protocol in hand, you can decide if a trip is worthwhile. Honestly, MJ, I think we’ll try to cover those here in Texas (and maybe California…) and treatment trials will involve periodic visits, so that may add up! I know what it is like to throw caution (and money) to the wind, though, and go wherever there may be help (BEEN THERE). What we’re going to do is EXPEDITE this, by skipping the lengthy steps of applying for grants, keeping the trials fairly local, and basically not paying a staff!!! Unheard of in research, believe me, but it’s about time we shook things up a bit, IMHO. While we get poked and prodded here, anything you can do to help with fund-raisers would be deeply appreciated. We’ll keep you posted, OK? Thanks so much, MJ. Big hug, Diana
I live in the UK, so it’s too far to travel - can we still participate in any way?
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!
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
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!
Amazing!! You are in Dallas!! What ARE the chances? Only through the power of social media could we ever gather so many (wonderful) folks together, with what our doctors would consider to be “very rare conditions”. I will shoot you an email, OK? Music industry?! OMG. Please do NOT hold my “singing” and “chair-dancing” against me, my friend. If it weren’t for music, I don’t know how I could have survived this loooooonnng ordeal, honestly. Music ALWAYS has a special place in my heart, and if you are able to help us utilize that someway to raise money, well, I’m “all ears”! Big hug, Diana
Give My Daughter the Shot! - 05 October 2012 12:26 PM
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.
Hi, Give my daughter the shot! I will email you, but for everyone’s benefit, I wanted to mention that a “CBC with diff.” (a VERY basic test) is a good idea, and as I mentioned in my MTHFR video, I think ALL of us should be checked for “thick blood” via a thrombotic risk profile. It is a SMART thing to do. I’m happy to look at your results, if you don’t mind being patient with me! Have you had your blood checked for “thickening” yet? Will you let me know how it comes out? Thank you, my friend, Diana
I had a brainstorm!!! (maybe it’s more like a sprinkle. ha.),
MANY of us have family members with M.S., chronic fatigue, chronic Lyme, fibromyalgia or rheumatoid arthritis. If so, would you please reach out to them to see if they would like to participate in the pre-clinical trials? As you probably know, I don’t think it’s a coincidence that so many of us have relatives with these conditions. Thank you so much! Diana
My son is on Diamox, but has not worked. He does have low co2, which I understand from you, may be the problem. We will try to get it up to make the Diamox work. We will also start zyrtec. Thanks for the raising the bed idea. He tries to sleep on side.
Your son’s success is an inspiration! Keep us posted. We are excited!