This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello, my friends. I am writing up my results of my clinical trial looking inside the eye at the ocular fundus in both MS, Ehlers-Danlos (EDS), and patients with both (thank you to all who all who participated!). People who were not able to get in the study in time are sending me their fundus photos (any eye doctor can do this, most do it as a part of a routine eye exam). Some images just didn't have the quality I needed, but some did.
If you would like for me to look at your fundi, feel free to email me a copy (or ask your doctor to send it over) to "volunteers@Prettyill.com" . I've found some evidence of "sticky blood" (I'll leave it at that because of the "medical SPIES"!), and I'd like to see how common this is in M.S. (either with or without EDS). As you likely know, this may completely change the treatment for those affected. Is this the cause of some of the "stenosis"? Is it the reason for "restenosis"? In these patients, is "restenosis" (which is often just assumed to happen by the patient) actually thrombus formation? Yikes.

As many of you believe, I think there are numerous reasons for the development of M.S. No matter what the reason, prior to even considering angioplasty, I think knowing this predisposition to thrombus formation is critical (obviously). What is WILD, is that I was able to pick this up in a patient BEFORE her blood work reflected it (it was "high normal"). Then she had three strokes. Eeks.

Blossom, I would LOVE to see your fundi! Anybody else?

As most of you know, I am a patient (and a therapeutic optometrist on disability) with two affected children. I'd like to help you on your journey, if at all possible.
Big hug,
Diana

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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

any time frame that would be best to get this to you by?

Is there any other name by which a "fundus" goes by? I am due for another OCT (I think that's what its called...) so should get around to seeing an eye doc.

hi dr. diana, was wondering where you've been. first, hope you are doing ok. and, of course i will try to get this done and sent. you must have remembered i have this mthfr thing going on. i should have known better but i'm not a dr. and the dr. doing the angio.didn't seem concerned about it when i told them before hand. but, i think at that time in the ccsvi world there were many of us that did not realize the vein scarring and clot issues were that serious. just, go get it done again---not quite that simple.

the eyes are the window to our soul and these symptoms they named ms seem to have a way of trying to consume our soul.

Well, sooner is better than later, but I don't as yet have a deadline.

Hmm, besides "George" and the occasional "Betty", "fundi" is usually best (sorry, couldn't resist). It's basically a detailed picture (photo) of the back of your eyes. The OCT is a bit different. Most eye docs include fundus photos as part of a routine exam -- but not all.

Thank you!
Diana

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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

Hi Blossom -- doing OK, just working like the proverbial DOG! Do you know what type of MTHFR gene you have, and if it is homozygous or heterozygous?

It IS critical that we figure this out before angioplasty... There are a few different reasons we can develop sticky veins or sticky blood, the MTHFR mutation being just one of them. Apparently, sticky blood isn't just related to Ehlers-Danlos. Yikes. Thanks for sending the photos over! Please let me know if it is OK to share them, or to use them in a publication, OK? I will, of course, protect your identity... Thanks so much, Diana

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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

I have fundi images from 2008 (3 years pre-angio) and 2012 (1 year post-angio) but my copies of them are really small. I will see if I can get better copies.

i recall the dr. saying i inherited the gene from both parents if that helps. i'll try to find out.

i think you got me mixed up with someone else i don't recall sending photos. but you can bump my memory if needed.

That's great, Cece! (ooh, before AND after photos? That just gets me all tingly!). I remember you had some increase in vision, post-angioplasty, didn't you? Did that effect continue?
Hopefully, your vessels will look just fine, my friend. When the blood is "sticky" and "thick" (eww...), we tend to have some very bad effects -- thrombosis being the biggie. Fingers crossed...

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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

Oh, Hon, I just meant 'when you DO send them'! You mentioned you would 'get them done and sent'.

Or was that another Blossom? You don't have to work very hard to confuse me. As I like to say, "BRAIN FOG IS REAL".
Diana

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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

I have electronic scans and a report of my Nerve Fiber Analysis from my last optometrist appointment in June, 2011. Is that what you want?

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Okay, I pulled up the e-mail that came with the scans and the doc (my nephew) called them "digital retinal scans" using the GDX. He sent 2 versions of the scans, one set of them "red free," along with the complete report - in color.

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Hi, Hon. The evaluation of the nerve fiber layer is actually NOT what I'm looking for. We just need the "plain old fundus photos". They are the actual photos of the back of your eye (the fundus). It's usually part of a routine exam... If you need a records release form to get a copy of the images to me, just holler, OK? Usually, a request is fine with them. Thanks so much, Diana

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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

hi dr. diana, my neuro. office that found the mthfr got back to me. she said i inherited both and they would say i would be homozygous. waiting to hear back from the eye doc.

Hon, was that homozygous for a1298c, perhaps? Do you know?

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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

they didn't say. i can call back and ask. is there a certain anything else i need to ask?