the Eye Doc blog

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Tue Jul 05, 2011 5:08 pm

Even though this research got brought up in a conflict, it is still really interesting. The author's conclusion was that "Suggested implications include a possible causal relationship on a connective tissue level with a higher susceptibility to MS in EDS." Nothing much has come of the article; it was only cited once by one other paper and there really isn't any other research. It's only because of what we now know about CCSVI that the pieces start coming together. DrDiana, I hope you do not mind me bringing this up over here!

http://msj.sagepub.com/content/14/4/567.short
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Postby DrDiana » Tue Jul 05, 2011 5:25 pm

Cece wrote:Even though this research got brought up in a conflict, it is still really interesting. The author's conclusion was that "Suggested implications include a possible causal relationship on a connective tissue level with a higher susceptibility to MS in EDS." Nothing much has come of the article; it was only cited once by one other paper and there really isn't any other research. It's only because of what we now know about CCSVI that the pieces start coming together. DrDiana, I hope you do not mind me bringing this up over here!

http://msj.sagepub.com/content/14/4/567.short


I don't mind at all, Cece. It IS interesting, and the M.S. world is SHOCKED. Most of them have never even heard of EDS (gotta love having not one, but two "special" conditions).

Before I jumped on the forum, someone here posted the article and you all were kind of kicking it around...

I wouldn't be surprised if there was a higher than 10-11 times incidence of EDS in MS patients. 90% of EDS patients are never diagnosed, and many of us are diagnosed with both! What are the chances of us having 2 very rare conditions simultaneously? Pretty rare, I think!

:)
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Postby Cece » Tue Jul 05, 2011 9:13 pm

Oh this is the same one from before then!

I also had never heard of EDS before. How do you get tested for it?
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Postby DrDiana » Wed Jul 06, 2011 9:34 am

Hi Cece,
EDS can be tricky -- I missed it on myself the first time through! Basically, you look to see how loose your joints are, and go from there. No one thinks they have loose joints, it seems, but there is something called the Beighton scale that helps. When I ran through that, I realized I scored a 9 out of 9 -- I was super flexible! Then we look for skin signs, blood vessel signs (easy bruising, for example), and if possible, we compare everything with the rest of the family (or whatever family we can).

Dr. Francomano (THE geneticist in Baltimore with EDS) suggested I put up some videos, so I try to talk people through it at Prettyill dot com. There's one that covers all 6 types, then 3 separate ones for the most common 3 types. Please take a look! A geneticist who specializes in connective tissue disorders (there's about 3 of them!) are the best ones to diagnose it.

When my IR said that having EDS should preclude me from having angioplasty, I explained to him that 90% of us are never diagnosed, and with the overlap to M.S., there's a good chance he has already performed angioplasty on an EDS patient! (I love my IR, BTW -- there's a funny video about him on my "Did angioplasy hurt?" video. I reassured him that I didn't have the vascular form, and he did it! And did it again for my 13 year old son! :)

It's something I'll bring out in my talk at the CCSVI conference, for sure!

Thanks for asking. I think this will start to get more attention soon. Dr. Sclafani is VERY interested in it (which is likely what got me in to the conference to speak! ha).

:)
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Postby blossom » Wed Jul 06, 2011 10:10 pm

hi dr. diana, first i wish you the best at the conference. with all you deal with on a daily basis with your own personal health problems and yet you are still manage to do the work you do- gotta give you a lot of credit.

your circumstances and your knowledge can hopefully be one of the stones turned over that helps get the pieces of the puzzle put together and we are all better off. looking forward to us all moving forward.
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Postby DrDiana » Thu Jul 07, 2011 1:05 pm

Thank you, Sweet Blossom,

I appreciate your kind words. Honestly? I don't think I am able NOT to help, if that makes any sense. For three years, I was bed/couch ridden; I'd written 'good-bye' letters to my kids (the toughest thing I've ever done). But when my kids became symptomatic (darn it), I was on a mission like no other to figure it out!

Blossom, one day, my son (age 9 - unable to go to school for 3 years), told me he didn't know how to live another day. So you see? No matter how difficult, I didn't have a choice, really. None of the doctors were able to help. It was not a good journey.

Seven years later, we're getting some answers. So while I tease that "I've donated my body to science while still using it" :) I truly mean that.

Moving forward (with only the occasional bump in the road!).
Big hug,
Diana
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Postby blossom » Thu Jul 07, 2011 3:25 pm

dear dr. diana, A MOTHER ON A MISSION! my eyes have teared up from time to time on this tims site because of what some are going through but when i read your response i got more than teared up.

then i thought of all the mom's and dad's that got short changed when it came to parenting. but to boot you got slammed with your child suffering the same way. too horrible to think of! BUT, it got you off the couch and kicked you into high gear "even though i'm sure the days are no bed of roses.

you posess knowledge and the driveing force that "say the expression" the momma grizzly kicked in. mess with me, but not my babies. fear stops and strength comes in.

there is no HOLY GRAIL, for any of this going on with us. and the differences yet the sameness in all of us - one shoe is in no way gonna fit all. but, your research and findings are very important. this thing that one type dr. owns ms or any other disease is why things got stuck in the mud for yrs. we need "all walks of dr.'s" and there will be bumps in the road--just so somehow we all get to the desired destination.

i had never even heard of the disease you have until you came here. i do have questions. so, me and others are listening, watching and waiting. ready to help if we can.
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Postby DrDiana » Thu Jul 07, 2011 7:17 pm

Oh, Jeez, Blossom,

Don't YOU make me cry now...

I am grateful to you for your kindness and empathy. Together, we'll all be better....

Big hug,
Diana
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby 1eye » Fri Jul 08, 2011 10:34 am

I also sent you a PM.

The $0.02 I referred to is an incident where I was watching TV by myself in a motel room in a little Pennsylvania mining town in the early-mid eighties. It was winter. The heater was one of those all-or-nothing types, so it was hot in there. About 10-15 years pre official "MS" diagnosis. I noticed my eyes were not just dry. No matter how hard I blinked, nothing would come into focus. Very frightening, such a long way from home. I couldn't drive like that! I was tired, though, and managed to sleep it off. It was one of those things I never told anybody, for fear I would jinx myself, and it would come back. It never has.
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby DrDiana » Sat Jul 09, 2011 5:11 pm

1eye wrote: No matter how hard I blinked, nothing would come into focus. Very frightening, such a long way from home. I couldn't drive like that! I was tired, though, and managed to sleep it off. It was one of those things I never told anybody, for fear I would jinx myself, and it would come back. It never has.

Wow, 10-15 YEARS before MS diagnosis?! Scary, indeed. Thank you for sharing that. I'm certain enough time has passed that you are now in the 'jinx-free zone'. :)
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby Cece » Tue Jul 19, 2011 1:07 pm

Hi, DrDiana. I don't know if you saw me at the patient symposium? I recognized you but did not get a chance to say hello because it was during the talks. I was sorry to have missed you.

But now that the symposium is over, what can you tell us about mast cells and whatever else you are on to? :)
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Re: the Eye Doc blog

Postby Cece » Sat Sep 10, 2011 6:34 pm

http://mseds.wordpress.com/2011/08/03/eds-confirmed/

A blog by a patient treated by Dr. Sclafani. She has MS and Ehlers Danos. I thought she does a very thorough job of explaining the diagnosis process of Ehlers Danos and some of the symptoms if you think you might have it. (The whites of your eyes are gray? Hypermobility? Hyperextension? Crumpled ears?)

And a sidenote, Dr. Francomano in Towson, MD, has an interest in Ehlers Danos, MS and CCSVI. :)
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Re: the Eye Doc blog

Postby blossom » Sun Sep 11, 2011 8:35 pm

anyone heard from the eyedoc?? hope all is well with her.
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Re: the Eye Doc blog

Postby PointsNorth » Sun Sep 11, 2011 9:28 pm

She gave a presentation at a forum I attended yesterday on Vancouver Island (a long ways away from the country of Texas). A great, eclectic group of presenters - from physicists to a dentist to IRs to an MP and a neuro-opthamologist (Dr. Di). I think some good video will be forthcoming. And Dr. K. Duncan, MP got a standing 'O' at its conclusion. A long day for me but very worthwhile.

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Hurry up and wait.
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Re: the Eye Doc blog

Postby Cece » Mon Sep 12, 2011 6:45 am

Between presentations such as that and starting up four clinical trials (!), along with usual duties and life, she is one of the busier people I know!
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