Aa
A
A
Close
620923 tn?1452919248
Utube videos of EDS dr~~~
Hi all here is a link to several videos by a Dr that has EDS and shares info on this condition.

I hope these help answer some questions:

http://www.youtube.com/watch?NR=1&v=ZhpOZNVIdLs
Dr. Diana as Patient explains the various forms of Ehlers-Danlos Syndrome

http://www.youtube.com/watch?v=JMpvnG0J4R0&feature=related
Dr. Diana describes the Classic form of Ehlers-Danlos (EDS) and how to differentiate it from the Hypermobility type.

http://www.youtube.com/watch?v=k4ob-Lf8sTo&feature=related
Dr. Diana as Patient describes the Hypermobility form of EDS

http://www.youtube.com/watch?v=0IWYD-JgImI&feature=related
Why EDS POTS patients are so ill
Discussion is closed
Cancel
9 Answers
Page 1 of 1
Avatar universal
  Selma,  Great idea to post Dr. Diana's video links here. I had just recently discovered The Driscoll Theory, and her website, prettyill . I know of at least one person with EDS whose life has been improved fantastically due to Dr. Diana's research. This person figured out that her worst symptoms were triggered by head movement, and after reading the info on CCSVI and EDS with POTS, found a doctor who diagnosed her with CCSVI. She recently had surgery to correct this, and has gone from a wheelchair to planning for college. No more fainting!

I printed out and gave a copy of Diana Driscoll's Theory to my son's doctor to read, but I don't really think my son's symptoms point to cranial hypertension or mast cell activation. He has symptoms of hypermobile EDS and severe postural hypotension, with tachycardia, but also has endocrine dysfunction, so difficult to figure out what's really causing his severe hypotension. He is due for another MRI soon, and his doc says they would be able to see excess CSF in subarachnoid spaces.

But I am spreading the word, where appropriate, about the Driscoll Theory. Some neurologists are starting clinical trials to test it, so there is definitely merit to the correlations.
Discussion is closed
Cancel
Comment
620923 tn?1452919248

  Hi thanks, We have so many in the Chiari forum too that have EDS and related issues and it is difficult to get members to listen to me...lol...so, I was hoping that they might get something from Dr Diana.

   I am finding her theories all very fascinating and informative.
Discussion is closed
Cancel
Comment
Avatar universal
Enjoyed the links. Thanks 4 sharing ::)
Discussion is closed
Cancel
Comment
620923 tn?1452919248

  Here is another link explaining POTS and it's relation to EDSers and Chiari.....http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory

Very Interesting...a must see.
Discussion is closed
Cancel
Comment
Avatar universal
I absolutely love Dr Diana!
Discussion is closed
Cancel
Comment
Avatar universal
Did anyone here try hear treatment plan? What is it by the way, diamox and antihistamines?
Discussion is closed
Cancel
Comment
620923 tn?1452919248

  Hi....for the past 3 yrs my PCP has me on antihistamines.....so long b4 her theory  was public....and it does help me in several ways....1- I sleep much better...2- controlling my PND also helps my GERD/reflux ....3- overall joint pain is better as well.

Do talk with ur Drs to find out if this is something that may benefit u....and have ur Dr review the video....
I am not on DIAMOX, but was on TOPAMAX for quite some time and no longer need it. TOPAMAX is similar to DIAMOX in that they are both diuretics and help with our headaches.
Discussion is closed
Cancel
Comment
Avatar universal
Interesting.
What antihistamines are the best ones?
Discussion is closed
Cancel
Comment
620923 tn?1452919248

  U need to ask ur Dr as to what is best for u....
Discussion is closed
Cancel
Comment
You must join this user group in order to participate in this discussion.
A
A
Recent Activity
Avatar universal
Blank
Jamie11285 joined this group
Welcome them!
Aug 16
620923 tn?1452919248
Blank
soccero, and selmaS commented on soccero's status
Jul 11
979826 tn?1389039958
Blank
soccero feeling absolutely horrible ;( Comment
Jul 09