the Eye Doc blog

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

Postby eric593 » Wed Apr 20, 2011 9:45 am

bluesky63 wrote:Just throwing this out -- are the little red dots telangiectasia? I don't know if that's what they're supposed to be called, but I wondered. Mostly because I also have tons of small red dots. This is different from petechaie and purpura, both of which I have had before, mostly when I'm sick or reacting to a med. This happened on plavix.

Johnson -- have you heard of biofilms? That dovetails perfectly with the bacterial theory. And what about boluoke (an enzyme supplement) to address fibrinolysis? I am considering these as additional missing pieces to help with the vascular hypothesis.

https://www.researchednutritionals.com/ ... ode=CBD202

Just thinking out loud here. The usual disclaimers apply -- brain full of holes, no medical degree, think for yourself, sense of humor please, etc. :-)


I've had what a doctor called cherry angiomas for a number of years now, red spots all over the place that apparently are more frquent with age:

http://en.wikipedia.org/wiki/Cherry_hemangioma
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Postby cheerleader » Thu Apr 21, 2011 11:39 am

Cherry angiomas, petechia, Schamberg's purpura, blood spots, etc. are all outward signs of endothelial dysfunction. The vessel walls become permeable and plasmic particles leak out into tissue. If this is happening in the body- where it can be seen on limbs and torso- it can also be happening in the brain's endothelium...where plasmic particles, including hemosiderin, can be deposited into brain tissue and activate the immune system.

It's all related. Endothelial dysfunction is a systemic disease.
http://www.ccsvi.org/index.php/helping- ... ial-health
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby DrDiana » Thu Apr 21, 2011 3:52 pm

Great info, Cheer!
Has anyone noticed any improvements by following this fairly closely? Any changes in our spots, et al?

:)
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Postby cheerleader » Thu Apr 21, 2011 10:43 pm

DrDiana wrote:Great info, Cheer!
Has anyone noticed any improvements by following this fairly closely? Any changes in our spots, et al?

:)


Jeff's spots, or petechial rash, which were red (at his flare in '07) faded to copper color and are now completely gone. He was liberally spotted on his ankles, calves, forehead and forearms. He looked freckled for about a year. He's been on the endothelial health program 2 1/2 years and had angio 2 years ago and follow-up angio twice. He no longer has any spots. Also, no new lesions on MRI.
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Postby Johnson » Fri Apr 22, 2011 1:27 am

cheerleader wrote:...
Also, no new lesions on MRI.
cheer


Brilliant!
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Postby DrDiana » Fri Apr 22, 2011 10:45 am

Johnson wrote:
cheerleader wrote:...
Also, no new lesions on MRI.
cheer


Brilliant!


That is WONDERFUL!!
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Postby DrDiana » Sun Apr 24, 2011 9:42 pm

Hi PCakes!

DrDiana wrote:I'm curious if your sister has any signs of increased CSF pressure in her head,
what are the signs? I'll 'google'.

I forgot to answer this question for you, PCakes -- so sorry.
Signs of increased ICP (or CSF volume, as most docs view it right now) include the feeling of fullness or pressure in your head, ear drums may ache, the feeling of pressure behind one or both eyes (as if they may pop right out!), getting suddenly flushed (if the increase is sudden), and headaches, especially if in the back of your head (occipital), radiating down your neck to the tops of your shoulders.

Mine became a no-brainer when I developed a CSF leak OUT OF MY NOSE (eww... "CSF rhinorrhea").

It sounds like we all have a plethora of various spots -- certainly some angiomas, petechia, telangectasia, etc.

Question: do you, or anyone here, have (something common in EDS) -- "livido reticularis"? It's a lacy looking purplish pattern just under the skin... It may be another indication of a type of vasculitis.

Thanks so much!
:)
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 DrDiana » Sun Apr 24, 2011 9:46 pm

Hi Cheer,

With endothelial issues, do you think alpha-lipoic acid (and research on same) is strong enough to add that to the list of treatments?

Also, you may want to consider adding Ehlers-Danlos Syndrome to that long list of affected individuals... :cry:

GREAT article, BTW!
:)
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 DrDiana » Sun Apr 24, 2011 9:56 pm

BlueSky,

I thought I should throw this out there for you... I'm not sure what the eye situation is in your family, but we always consider Sticklers Syndrome with loose joints and hearing issues (it can be diagnosed with a blood test, but you may just need a fairly extensive genetic work-up to see if it is possible for you).
I usually love Wiki, but this one isn't completely accurate. Not a horrible place to start though:

http://en.wikipedia.org/wiki/Stickler_syndrome

Thanks, BlueSky!
:)
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 Johnson » Mon Apr 25, 2011 1:18 am

DrDiana wrote:Hi Cheer,

With endothelial issues, do you think alpha-lipoic acid (and research on same) is strong enough to add that to the list of treatments?

Also, you may want to consider adding Ehlers-Danlos Syndrome to that long list of affected individuals... :cry:

GREAT article, BTW!
:)


Yes to the Alpha lipoic acid. I've been using it for years. (I know the question was not directed at me)

"livido reticularis" - yessum. I have a few of those. Loose joints and the hearing bit too.
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Postby DrDiana » Mon Apr 25, 2011 12:16 pm

Hi Johnson,

I'm GLAD you jumped in!

I've taken the alpha-lipoic acid off and on (more off than on!), but started to become more "religious" with it after the intimations that it may help our endothelial issues (and Alzheimers -- which I don't have, but brain fog? Heavens, yes).

Our livido reticularis is basically all over our arms and legs -- I always thought it was normal for fair-skinned folks (our skin is fairly transparent).
My endo freaked out, though.

I read that EDS folks show this, but wondered if MS folks do, too? Or if so, are these folks (i.e. you, for example!), EDS patients who develop MS?

This is what we look like (especially if it is cold, but even in room temperature...):

http://bit.ly/gcMtYS

Thanks so much!



:)
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 Brightspot » Wed Apr 27, 2011 1:09 am

Very interesting thread.

Thanks all.

It reminded me that a few years ago I heard some discussion, or reference to MS and gout being mutually exclusive. (anyone else heard this?)

So, I looked at the lists of foods associated with increased blood uric acid levels and decided not to go there (although wine, beer and cheese are appealing...).

I also spoke with a pharmacist (at my local drug store) and did a web search to see if there might be a reletively benign drug with the side effect of increasing blood uric acid levels, but went no further with the idea...
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Postby tzootsi » Wed Apr 27, 2011 7:34 am

Brightspot wrote:Very interesting thread.

Thanks all.

It reminded me that a few years ago I heard some discussion, or reference to MS and gout being mutually exclusive. (anyone else heard this?)

So, I looked at the lists of foods associated with increased blood uric acid levels and decided not to go there (although wine, beer and cheese are appealing...).

I also spoke with a pharmacist (at my local drug store) and did a web search to see if there might be a reletively benign drug with the side effect of increasing blood uric acid levels, but went no further with the idea...


I believe inosine will increase uric acid levels. It was actually involved in an MS trial a few years ago. Inosine is readily available in health food stores as it is sometimes used by body builders.
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Postby Johnson » Wed Apr 27, 2011 4:38 pm

Yes, gout and "MS" do seem mutually exclusive.

I took hydroxy urea for about a year (had to have it "smuggled" from Hong Kong), but according to jimmylegs (somewhere in this forum) zinc supplementation increases serum uric acid.
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Postby DrDiana » Wed Apr 27, 2011 4:54 pm

Wow, guys, that is fascinating.

Are you all throwing alpha-lipoic acid in the same pot as uric acid? I'm not so sure we should dismiss alpha-lipoic acid because it has such different concentration levels in the serum and in the liver, as compared to uric acid.

I've been working hard to AVOID becoming acidic in order to continue to more easily drain my CSF with Diamox. It never occurred to me that alpha-lipoic acid could affect my pH that much (well, I have it checked every week, so I'll let you know!).

No takers on the livido reticularis? 8O

http://bit.ly/gcMtYS

Maybe this is just an EDS thing...

Thanks so much!
:D
Dr. Diana

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