Sticky blood -- can I see the back of your eyes?

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

Re: Sticky blood -- can I see the back of your eyes?

Postby DrDiana » Sat Aug 18, 2012 9:16 am

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

YES, Blossom! That IS critical. I'm surprised they didn't tell you. I think it's a good idea to always get your 'raw data' in hand... Let us know?
:smile: Diana
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Re: Sticky blood -- can I see the back of your eyes?

Postby SaintLouis » Sat Aug 18, 2012 7:05 pm

Hi Dr. Diana-

I'm trying to get fundus pics for you from eye doc. Meanwhile, regarding your comment about the MTHFR gene, It caught my eye because just this week I learned I have a single copy C677T mutation, but NO A1298C mutation. I was left with the impression from the the doc's office that this was finding "clinically insignificant" in general life.

So ...I guess that makes me heterozygous?? What do we suspect that means in the scheme of things, any ideas yet?

Many thanks for all you're doing on this front.

SaintLouis
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Re: Sticky blood -- can I see the back of your eyes?

Postby DrDiana » Sat Aug 18, 2012 7:11 pm

SaintLouis wrote:Hi Dr. Diana-

I'm trying to get fundus pics for you from eye doc. Meanwhile, regarding your comment about the MTHFR gene, It caught my eye because just this week I learned I have a single copy C677T mutation, but NO A1298C mutation. I was left with the impression from the the doc's office that this was finding "clinically insignificant" in general life.

So ...I guess that makes me heterozygous?? What do we suspect that means in the scheme of things, any ideas yet?

Many thanks for all you're doing on this front.

SaintLouis

I believe the heterozygous presentations are OK... There is some talk about how that may not be true, and I've just started researching this. But my gut tells me that any symptoms with the heterozygous presentation are likely a red herring. Not so with the homozygous A1298C.
I'd still love to see your fundi, though!
:) Diana
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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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Re: Sticky blood -- can I see the back of your eyes?

Postby CureOrBust » Sat Aug 18, 2012 9:34 pm

DrDiana wrote:
CureOrBust wrote:Is there any other name by which a "fundus" goes by?

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.
Ok, I just had a quick search for someone who performs Fundus images locally, and I came across most places offering "Digital Retinal Scan". Is this the same? http://www.specsavers.com.au/eyecare/drp/

And these guys offering "wide" version.
http://www.opsm.com.au/eye-care-eye-tests-ultrawide-digital-retinal-scan

oooo... I just noticed they also offer an OCT scan.
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Re: Sticky blood -- can I see the back of your eyes?

Postby DrDiana » Sun Aug 19, 2012 7:42 pm

CureOrBust wrote:
DrDiana wrote:
CureOrBust wrote:Is there any other name by which a "fundus" goes by?

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.
Ok, I just had a quick search for someone who performs Fundus images locally, and I came across most places offering "Digital Retinal Scan". Is this the same? http://www.specsavers.com.au/eyecare/drp/

And these guys offering "wide" version.
http://www.opsm.com.au/eye-care-eye-tests-ultrawide-digital-retinal-scan

oooo... I just noticed they also offer an OCT scan.

There you go. No biggie, right? I'd definitely go with the ultrawide -digital scan (it's likely the Optos -- the same instrument I used for my fundus study). Be sure to ask for a digital copy (I'd take a USB key), or at least they could email it to you (and then to me). How does that sound? I wouldn't have all of the bells and whistles, but could at least change the magnification as needed.

Let's see what we have (and remember, there is a decent chance they will say the image is normal, because they are looking for the "usual stuff". I am looking for the "unusual" because we are special. :) 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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Re: Sticky blood -- can I see the back of your eyes?

Postby SaintLouis » Wed Aug 22, 2012 1:39 pm

Hi Dr. Diana,

I've got fundus pics for you ... is there an email address I can use to send them to you?

Thanks,
SaintLouis

Edited: Never mind, found the email address and have sent images. :-D
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Re: Sticky blood -- can I see the back of your eyes?

Postby blossom » Mon Dec 03, 2012 9:45 am

hi dr. diana, i was wondering if NPH is part of your research. or if one might call it an offspring of these complicated hydraulic flow issues. i thought somewhere you talked about pressure and the eyes certainly tell a lot "when looking into the window of our soul"--------------hope you are doing well.

dania had put this on tims and i thought of your research i just wondered. might be way off.

http://www.youtube.com/watch?v=TpO0guEa ... ture=share
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Re: Sticky blood -- can I see the back of your eyes?

Postby DrDiana » Mon Dec 03, 2012 1:34 pm

Hi Blossom, I have PERSONAL interest in NPH (a family member went undiagnosed for years, even though the MRI CLEARLY exhibited NPH). :( I wasn't able to open the link you had, though...

I'm focusing my efforts now on pushing through my treatment trials, so I do need to FOCUS. In likely order, we'll first treat gastroparesis/IBS (do you have this?), then MS, and EDS with dysautonomia, then RA and endometriosis (hopefully the team will be bigger by this time).

Hang in, Hon, and wish me luck! I know I've been off the grid a bit, but it's for a purpose! One of the docs I work with said he was afraid I would "burn out". ha. My kids are affected -- you know how motivated we are when we are patients AND OUR KIDS ARE PATIENTS?! I'm not going to stop now!! Heavens.

So if you don't hear from me for a while, please know I'm at it 24/7 (and I'll still be at Pretyill.com) and have made some HUGE findings that should help us all. Yeah! And that includes you, my friend,
:) 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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