• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

Reply To: What first?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › What first? › Reply To: What first?

October 18, 2013 at 11:58 am #4529
Barbara
Participant

Hi Graham,
No problems, I reply to my own posts all the time, if I’ve forgotten something, or find something else of interest. Lots of people look at the posts, even if they don’t answer them. I don’t answer them myself sometimes, even when I probably know the answers, usually because I’m too SHATTERED! (as many of us are on here).

1) Neuro-opthalmologists assessment: – first of all I went down to Vision Express where, at the same time as an eye-test, if you ask they’ll take a photo of your funduses and again if you ask, they will give you a password so that you can access them yourself, online (to examine, or to send to your GP, or other doctor). It’s the only place in the body where the blood vessels can be viewed directly and Dr Diana has told us what to look for.

My optician there examined the fundus photos with me, to look for changes in the ‘a/v ratio’, to look for any ‘tortuousness’ or ‘beading’ of the vessels and to look at the state of the optic disk. If they find any abnormalities, they should refer you on, via your GP, to a Neuro-Opthalmologist (NO) for further investigation. I went to see a local NO, within 15 miles, so one might be available in your area.

These things above can be easily overlooked by the optician, especially if they are not used to looking for them, so you may need to educate them on the nuances of EDS etc. You really need to review the photos with your optician and don’t be afraid to speak out if you see something they haven’t:
Normal A/V ratio = 2/3 to 4/5, so arteries are at least 2/3 the size of veins.
Abnormal A/V ratio = 1/2, so arteries appear to be just half the size of veins (aka 50%).

Tortuousness = they bend and contort in places, not running a smooth course.

Beading = where a vessel’s walls are not smooth and parallel along it’s length, they bulge out in places, like beads.

This check is vital because obtaining the correct treatment depends on these things being spotted in the first place. I think you will find a course of Diamox should help, as mentioned above.

2) My Neuro-otological assessment took place at the UCLH, when I went to see Prof Christopher Mathias, who diagnosed my P.O.T.S.

For the dizziness, it was a Dr Davies and her team who put me through a suite of tests and determined that I had Peripheral Vestibular Dysfunction (due to the head injury) It manifests very similar to how you describe it. I was put on Cawthorne Cooksey exercises but couldn’t ever finish the whole sheet, as I was too badly affected. They did help to some degree (that is the exercises that I could achieve).

I think your GP is your first port of call and, if they only allow one thing to be discussed per appointment, a simple way of approaching that is:

“Doc, why am I so disabled, here’s my list of symptoms” and hand him a copy of your symptoms list – let him sort it out!
Regards
Barbara
(UK)

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020