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Surviving and Thriving with Chronic Illness

Clinical Study for MS and/or EDS Patients—- now open!

Join our clinical trial as we look at potential vascular changes in the fundus (back of the eye) in patients with Multiple Sclerosis and/or Ehlers-Danlos Syndrome. Are there signs of CCSVI?
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Dr. Francomano is my doctor, she is amazing.  I wish there were more doctors with her compassion.  I hope you are getting results from the study.  smile

How long are you doing this study?  I would like to do this study but not able to get to Your area on Saturday.  Would it be an issue if we did my test on a Saturday. 
Thank you,
Amy Bromley

I think I have these issues with my eyes.  I’ve been diagnosised with Ehlers Danlos III and HyperPOTS with possible mast cell activation disorder.  Having autoimmune issues too with vitiligo and alopecia. 

I’ve been checked by two eye docs and they can’t find out what’s wrong with my eyes.  But, like you, they feel like they will sometimes pop out of the sockets and they hurt.  It also hurts to look up.  One eye seems to hurt more than the other, but they both hurt.  Also, am real nearsighted.  Probably due to the EDS.  When a child had to change glasses very fast when growing - was put into hard contacts at age 11 and it stopped the progression some.

By the way, I gave your article on EDS and the possiblity of the compression on the brain stem and it causing POTS issues to one of the main docs at Mayo,AZ and he is reading it.  Don’t know if it will help us, just my telling him of the theory - he didn’t buy it - but who knows what he thinks after reading the article.  He is one of the neuro docs there who is the “specialist” in POTS.  Trying to get the word out and get help where ever we can.

Issie

Hello, I have EDS III. I recently went to the eye doctor for what I thought was an eye infection, which was not , of course. I learned along time ago that nothing is what is seems when you have EDS hahah. The doctor is sending me for a MRI to rule out MS. At 37 I really thought I have been through it all. I have been on disability for over 10 years now because of migrains and of course the wonderful dislocations. Is the vascular changes in the back of my eye something they would have seen at the appointment or will see on my mri? Is CCSVI something I should look into? Please help;)

I have eds classical type and an 61 yrs
I have a lot of color seen in the back of my eyes noted at exams
it does not bother me. is this potentially serious
I am new to the website

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Wanting to put this out there. I’d read where doctors are reversing MS by clearing excess iron blockages in the brains of MS patients.  How is this related to POTS?  I am finding this fascinating information.  I have had several in the family with various different diagnosis such as MS, some unknown diagnosis unable to get to the bottom of it.  And I belief it’s EDS and POTS behind these possibly.  I have signs of EDS and now feel I am developing POTS. hmmm  Anxious to hear back!

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