PrettyIll.com

Surviving and Thriving with Chronic Illness

MS and EDS - Are they related

Dr. Diana discusses the overlap between Ehlers-Danlos and Multiple Sclerosis. How could these conditions be related, you ask? Be sure to pop in on Prettyill.com! I found this old video in my archives -- can you tell I hadn't started mast cell treatment yet? smile

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I discovered your website by accident this morning and I am so glad I did. Listening to you explain the correlation between EDS and MS has been very interesting. My daughter and I both have POTS,as well as EDS. I have been checked for MS many times. I am anxious to weed through your website and look forward to visitng many more times. I have a blog entitled POTS and Plans—-could I ask you a few questions/interview you? Mary POTSandPlans at comcast dot net

Hi Mary, I am in Canada speaking at the National CCSVI Society meeting, where I met a couple of people with both EDS and MS (and found another MS patient who I have no doubt has EDS). Found a couple of likely mast cell patients, too. Can we circle back when the dust settles and see what we can do about an interview? I’ll shoot you an email. So glad you like the site.

No rush—-whenever you have the time is fine. BTW—-after listening to some of your posts yesterday I wrote my daughter’s doctor an email and he graciously ordered several tests including an MRI. So,as soon as the refferals come we can rule some things in/out. Thank You.

Hi Dr Diana,
I was thrilled to meet you in Sydney BC, and for the first time in my life I thought here’s someone that understands whats going on. I was diagnosed with Classic EDS my son also has EDS we both attended the EDS clinic in Cincinatti and met Dr Wenstrup where we both went though mill with diaganostic tests and such.
My MS diagnosis came a few years later and then I was un-diagnosed but I was re-diagnosed and back and forth till I got so tired of it I told my doctor lets just treat the symptoms. I was actually in a wheelchair for 8 years and you can say “Pretty ill” I am doing much better thanks to Dr Bill Code who helped with changing my life style especially for my MS.
I was wondering if there are any articles I could give my un believing Doctor to connect the two disorders

Hi Janet, How small this world is! Thank you for your sweet comments and I’m so glad that Dr.Code has been helping you. I may be able to take it a step further (I say, humbly).smile First, do you have that nasty pain in the back base of your head radiating down your neck to the tops of your shoulders? If so, can you contact me (well heck, even if you don’t have this) via my email on the contact page? I figured out something BIG. It will be in Part 2, but I don’t want you to have to wait. Big hug, smileDiana

Oh, and Janet—those articles? As soon as I write them, we’ll have them. ha. I have an article that shows how MS patients are more likely to have EDS than the general population. The reverse is true, but is not in a published article yet (I learned this by rubbing elbows with researchers). I’ll put the article under “Handouts” for you, OK? smile Diana

Dear Dr Diana. I so wish you were in the UK. I have been suffering slowly but gradual symptoms of MS. At one point a neurologist thought I had Devics Disease. Till my lumbar puncture came back clear. I’ve got one lesion on my brain front right. Tests don’t seem to help and I can’t get a diagnosis apart from FND then myelopathy oh and medically undiagnosed. I know I have something going on and would just like some answers. By the way I have a daughter with EDS hypermobilty and two other daughters with CRPS.

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Hi, could I have some information about the study that can be done through email/ Skype? I live in England have Vascular Ehlers Danlos syndrome and have been diagnosed with a single lesion so far with several MS symptoms, I am due to have more MRI scans soon to see if I have developed any more.

I was diagnosed with MS back in 1978 because of symptoms I’d had since I was 16 that was eight years being told by another Doctor that I was attention seeking or making things up. I have had an MRI of the brain and spinal cord with no lesions showing, I have also had 5 lumber punctures with not a full diagnosis. I have seen many Doctors and a professor and they all say the same yes MS, if by nothing else with my symptoms. I am now 64 and use a wheelchair as I can no longer walk. While growing up myself and brothers were told that our aches and pains in our joints were just growing pains. One brothers children and my own have been told the same do you think that I should be tested for EDS.

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