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

Postby Cece » Tue Apr 19, 2011 12:08 pm

Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.

www.thisisms.com/ftopicp-44754.html
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Postby bluesky63 » Tue Apr 19, 2011 2:16 pm

All right, after reading that I want a dermatologist to weigh in. :-)

I know from my own personal experience when I've had petechiae and when I've had purpura. And I know when I've had blood blisters. But different from those are the spider veins, the phlebitis, the spreading red spots, and other red things. I have also had odd blisters that end up becoming permanent faded spots after the blister phase dies away.

And different again are the freckles that every redhead lives with. :-) (Plus the birthmarks.)

So many things to analyze! Bring on the dermatologist. I know what I have been told before about my own body and its oddness, but I am not qualified to speak about any of the other multiple odd red spots!
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Postby Johnson » Tue Apr 19, 2011 3:14 pm

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. :-)


Yes! to the bio-films bluesky. In fact, I had a bio-film problem on one of my feet - contracted at a spa in Japan - and after 13 years with it, finally resolved after 3 months on Abx protocol. It is conjectured that bio-film clogs the Vit. D receptors, which is why we w/"MS" seem to have issues with Vit. D levels. (check out http://www.bacteriality.com).

The red spots - that are not petechia, telangiectasia, or purpura fulminans - I have mostly on my trunk. They are itchy, but painful. My Abx Rx Doc. says that they are vasculitis. They have diminished, but not disappeared since I started the Abx protocol.

I re-iterate bluesky's disclaimer. I am but an armchair physician.
My name is not really Johnson. MSed up since 1993
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Postby DrDiana » Wed Apr 20, 2011 7:07 am

Johnson wrote:
blossom wrote:
...
here is food for thought--for a few yrs. now i've had an itchy spot on my back where the scolosis is bad. the caregiver said all she could see there were very little surface veins something like spider veins. she said today there ere more. asking my chiro. today if this could mean anything. he even said out on the limb but in theory when there is something wrong with a main vein collaterals form. say the agyous vein in the spine is jammed up and these collaterals are trying to form. ????

...

This leads to the issue of chronic bacterial infection -manifesting as vasculitis. Vasculitis in the tiny veins in the brain, and in the larger veins IJV, azygos, iliac, etc. Could a bacterium trigger the changes in collagen in the venule? (semi-rhetorical question)

Perhaps we can live with venous malformations like septa, webs, veering valves and such until the increasing insult from bacteria throws it over the edge into "MS". I would bet that we all have visible vasculitis such as spider veins, and the like.

I hate it when they don't put a picture on the jig-saw puzzle box and half the pieces are missing!


Hi Everyone!
Blossom: I'll ask Dr. Flanagan if he can shoot me a couple of images (it can be hard to do with some of those programs, tho!).
With what info we have (and similar disclaimers used by BlueSky -- <3 that!), you have all of the symptoms of a tiny stroke in your brainstem (just like the doctor on YouTube I mentioned) and because they suspected that at one point, it's hard NOT to lean that way (pun intended). :) It doesn't sound like you are having trouble getting oxygen into your brain (no cog fog), which is great.
A connective tissue disorder (and the scoliosis and weak vessels that come with it) is possible. It is SO easy to miss this, which is why I made videos to explain (and show) the major types (coming live soon). I'll holler at you when those are up, OK? There is a LOT to explain with that! I think it's worth considering, for answers if not for treatment.

For what it's worth, I can shed some light on what "traditional medicine" thinks of our little vessels and spots, and what "new thinkers" are wondering...

Johnson, you are right that bacterial infections (actually any infections) can cause these new vessels and vasculitis, but because Blossom's are over her area of scoliosis, I suspect they are collaterals (yes, just like you'd see in our necks with lousy IJV's). Likely, an artery or vein is pinched or damaged because of the scoliosis and collaterals are trying to pick up the slack.
"Traditional medicine" doesn't worry much about telangectasia (small new vessels) or petechial hemorrhages (1-2 mm red spots) UNLESS they come on suddenly, are in the eyes, are numerous, or are associated with some other congenital issues. There are syndromes that cause telangectasias in the brain, and we see other ones in other areas, which lead us to look in the brain (especially with epilepsy). Now, having said that, I think, as most of you do, that we are missing something BIG with these vascular changes.

Let's talk about ME (ha). As a patient with Ehlers-Danlos, but without the vascular form, I still have petechial hem.'s and am prone to spider veins, little telangectasias EVERYWHERE, and as Johnson and BlueSky mention, signs of vasculitis. A couple of things that I am looking at include mast cell reactions (sudafed can help us) and cytokine reactions. (Why are so many of us suddenly 'inflamed'?). And Johnson, why do some of us develop MS, and not others? What IS it that makes some of us more prone to developing MS? I also wonder if Parkinsons may have a similar cause... And for everyone, how many of us have subtle connective tissue disorders that allow antibodies to cross the blood brain barrier and interfere with our brains and healthy neurons?

This is but one reason that I am so interested in your discussion of the change of collagen from 1 to 3. I wonder what the trigger is for that to occur -- it may be the same thing that makes our vessels weak, leaky and, well, "messed up" (that's a medical term).
:wink: On Ehlers-Danlos forums, we talk about many of the SAME issues. Dr. Hal Dietz (researcher in vascular EDS) is making some headway and he thinks he is on to something that will result in us taking a pill to "fix" our vessels. I think he'll come forward with it soon.

http://www.hopkinsmedicine.org/geneticm ... dietz.html

More questions than answers, I know. This is why these forums are so important. We can compare notes and hopefully find answers sooner. I am honored to be surrounded by you all -- your level of knowledge and research is humbling.

So, does anyone get flushed when they feel yucky?
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 » Wed Apr 20, 2011 7:22 am

Shoosh: My daughter has hyperfexability of several joints, suffers from migraines and is experiencing some gastrointestinal problems.


Yes, PLEASE consider Ehlers-Danlos. We don't know about 80% of the genes for EDS, so a clinical diagnosis is usually the way to go. A skin biopsy can confirm it, but I run through the signs and symptoms of the main types on my soon-to-be website PrettyIll dot com. It may make it easier for you than reading about it (or not. ha)

EDS is usually an autosomal dominant gene, so you may want to make screening for it a family affair. Geneticists like to see as many family members as possible. With an apparent link between EDS and MS, I think it is something to consider FOR SURE.

:)
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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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Postby DrDiana » Wed Apr 20, 2011 7:47 am

Cece: Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.

www.thisisms.com/ftopicp-44754.html


Wow. You guys have already been there, done that. I'll know to check out the threads first, next time!

One thought I had concerning the spots (and whether they blanch when pressed on) -- my hubby, who doesn't have MS or EDS (he thinks he has "perfect genes" ha) had an episode of sudden onset of these spots. Before they appeared, his joints became stiff and I rushed him to the emergency room. Petechial hem.'s appeared, and they had to rule out Rocky Mountain Spotted Fever (and did so by finding out that the spots didn't blanch when they used a glass slide to press on them). Spotted fever is caused by rickettsia (carried by ticks).

He left the hospital a couple of days later with the guess that he had a strange reaction to a virus or a viral antibody. But guys, he almost died that day -- his organs were shutting down incredibly fast and he looked like an octopus with all of these IV's in him at one time -- they were 'shot-gunning him' with everything they could think of.

If his vessels and blood brain barrier are "normal" and he got spots from a virus, what the heck does that mean for those of us who are "less perfect"? Yikes.

I developed a new level of respect for viruses that day...
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 » Wed Apr 20, 2011 7:59 am

DrDiana wrote:
Cece: Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.

www.thisisms.com/ftopicp-44754.html


Wow. You guys have already been there, done that. I'll know to check out the threads first, next time!

I think of it as being like a party here, just because a few people had a conversation at the start of the night doesn't mean another group can't have a similar conversation later. We should learn from what has gone before but not to the extent that we shut down the current conversation when it is new to us!
I developed a new level of respect for viruses that day...

What a story. Glad that he is ok.
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Postby dlb » Wed Apr 20, 2011 8:33 am

DrDiana wrote:One thought I had concerning the spots (and whether they blanch when pressed on) -- my hubby, who doesn't have MS or EDS (he thinks he has "perfect genes" ha) had an episode of sudden onset of these spots. Before they appeared, his joints became stiff and I rushed him to the emergency room. Petechial hem.'s appeared, and they had to rule out Rocky Mountain Spotted Fever (and did so by finding out that the spots didn't blanch when they used a glass slide to press on them). Spotted fever is caused by rickettsia (carried by ticks).

He left the hospital a couple of days later with the guess that he had a strange reaction to a virus or a viral antibody. But guys, he almost died that day -- his organs were shutting down incredibly fast and he looked like an octopus with all of these IV's in him at one time -- they were 'shot-gunning him' with everything they could think of.

If his vessels and blood brain barrier are "normal" and he got spots from a virus, what the heck does that mean for those of us who are "less perfect"? Yikes.

I developed a new level of respect for viruses that day...


Dr. D,

Interesting story... my son had an issue similar to this when he was about 12 yrs old. Petechiae all over his torso. The doctor was worried about menengitis & had us come to the hospital every day for blood tests for almost a week. We were planning a ski trip to Montana & he almost never let us go (he was that concerned about this weird thing happening to our son). In the end, he wrote a letter, explaining what he had been testing for, etc, for us to take along. He found nothing in the blood work & made a final assumption that it was a viral thing. This is my son who had a coarctation of his aorta & surgery to correct that when he was 6. He has migraines & cold feet all the time, just like me.... I worry about him - too many similarities....
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Postby PCakes » Wed Apr 20, 2011 8:47 am

Hi Dr Diana,

Nice to meet ya :)

Quick question.. Does Ehlers-Danlos carry auditory/inner ear symptoms? I have a sibling suffering with, what was diagnosed as, 'Meniere's' . There are three of us.. I with a CIS MS diagnosis, another with as many connective tissue issues a body might carry and the one mentioned with Meniere's. She presents with extreme vertigo issues, tinnitus and unilateral hearing loss. As a child she loved to 'show off' the ability to 'bend' her fingers. 8O

I had never heard of EDS before this string.

Thanks,
pc
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Postby DrDiana » Wed Apr 20, 2011 8:52 am

dlb wrote:
DrDiana wrote:One thought I had concerning the spots (and whether they blanch when pressed on) -- my hubby, who doesn't have MS or EDS (he thinks he has "perfect genes" ha) had an episode of sudden onset of these spots. Before they appeared, his joints became stiff and I rushed him to the emergency room. Petechial hem.'s appeared, and they had to rule out Rocky Mountain Spotted Fever (and did so by finding out that the spots didn't blanch when they used a glass slide to press on them). Spotted fever is caused by rickettsia (carried by ticks).

He left the hospital a couple of days later with the guess that he had a strange reaction to a virus or a viral antibody. But guys, he almost died that day -- his organs were shutting down incredibly fast and he looked like an octopus with all of these IV's in him at one time -- they were 'shot-gunning him' with everything they could think of.

If his vessels and blood brain barrier are "normal" and he got spots from a virus, what the heck does that mean for those of us who are "less perfect"? Yikes.

I developed a new level of respect for viruses that day...


Dr. D,

Interesting story... my son had an issue similar to this when he was about 12 yrs old. Petechiae all over his torso. The doctor was worried about menengitis & had us come to the hospital every day for blood tests for almost a week. We were planning a ski trip to Montana & he almost never let us go (he was that concerned about this weird thing happening to our son). In the end, he wrote a letter, explaining what he had been testing for, etc, for us to take along. He found nothing in the blood work & made a final assumption that it was a viral thing. This is my son who had a coarctation of his aorta & surgery to correct that when he was 6. He has migraines & cold feet all the time, just like me.... I worry about him - too many similarities....


DLB, wow, you had a good doctor. In kids, most docs assume petechiae are viral... Thinking about that - in kids, their immune systems are not great yet, so viruses (etc) can cause symptoms that a "normal" adult would not experience.

With EDS, many of us show low immune systems (my viral antibody titers to EBV CMV got higher and higher after I was "triggered" and are now so high, they are off the chart, so we quit checking.

Could our poor immune systems contribute to viruses (etc) causing these petechiae almost as if we are children?

Maybe I'm assuming too much -- do patients with MS usually have lower immune systems? If you'd like to share some of your symptoms I'd be happy to see if there is anything I can contribute...
:?
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 » Wed Apr 20, 2011 9:12 am

PCakes wrote:Hi Dr Diana,

Nice to meet ya :)

Quick question.. Does Ehlers-Danlos carry auditory/inner ear symptoms? I have a sibling suffering with, what was diagnosed as, 'Meniere's' . There are three of us.. I with a CIS MS diagnosis, another with as many connective tissue issues a body might carry and the one mentioned with Meniere's. She presents with extreme vertigo issues, tinnitus and unilateral hearing loss. As a child she loved to 'show off' the ability to 'bend' her fingers. 8O

I had never heard of EDS before this string.

Thanks,
pc


PCakes! So nice to "meet" you! I <3 your name and avatar, and am unable to look at either without smiling.

YES!!! EDS and inner ear disorders!!! My sister was also diagnosed with Meniere's (which ends up being a kind of catch-all for ear problems they can't diagnose, I've learned). My son and I have squishy eustachian tubes -- get this -- when the pressure in our head is too high. We are both on medication to lower the pressure, and when it starts to wear off, the squishing starts. And I've had some severe true vertigo (as if I'm on a boat), along with the more typical dizziness that we always suspected was a CSF leak into my ear(s). (We all have EDS). Here's a quick link, but there are likely better ones out there.

http://www.hear-it.org/page.dsp?page=1841

Your family tree sounds very typical of EDS. Some family members are affected differently, but when you compare notes in the family tree, the picture starts to come together.

Google is our friend, but so much on the internet still shows only the severe cases of skin stretchiness and hypermobility (circus freaks, etc). I even missed EDS in my own body for a while because of the info out there.
I've made a video-based website that will talk you through it and it should be out in a week or two (or three -- I have to learn how to update it -- oh my). Can you bookmark PrettyIll dot com? I have an intro on it now, but I get into the overlap of EDS and MS, diagnosing EDS, CCSVI, the whole ball of wax.

I'm curious if your sister has any signs of increased CSF pressure in her head, which can also cause a leak into the inner ear. My pressure got so bad that I developed a CSF rhinorrhea (a leak through my nose. Eww...).

PLEASE look into EDS and I'll do my best to talk you through it, OK?
:?
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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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Postby cheerleader » Wed Apr 20, 2011 9:17 am

Hi Dr. Diana and the spotty bunch (what a great name for a band!)

It was petechiae, jaundice, high liver enzymes and high coagulation numbers that started my quest in '07. Jeff had them all...his neuro said he was drinking too much alcohol. I told her he didn't drink...she rolled her eyes.

He was tested for viruses, bacteria, even had the Igenex Lyme test. Nothing. That's when I looked into the "coagulation cascade" which is activated after hypoxic injury. Jeff had been at high altitude for a week before his first flare and those blood numbers. My theory was that he suffered a loss of O2 and his body was trying to recover. I created the endothelial health program to help normalize blood numbers, return liver function, help reoxygenation. I put it up on this site, and sent it to Dr. John Cooke at Stanford. When the Zamboni research came out, it seemed like the missing piece...of course! I sent it to my Dr. Cooke. Slowed venous drainage would exacerbate an hypoxic injury to the brain...

Endothelial dysfunction can lead to leaky veins, veins that allow particulates to leave the vessel and deposit into tissue. You don't need a virus or bacteria. Low O2 and the coagulation cascade to do this. Like petechia, like leg ulcers, like blotches....

As far as the collegen shift, Dr. Gabbiani says it is due to hemodynamic changes...disturbed blood flow creates inflammation and remodels collagen in those with varicose veins. This also happens in the ateries. BUT what if CCSVI can occur in those who have this remodeling due to genetics...like those with ED?? That's been my quesion. These people would not show truncular venous malformations, but would have inflamed veins and slowed venous drainage.

How to treat? I think the endothelial health program can be a great place to start...it's helped Jeff regain perfect serum numbers, no more spots, no more high coagulation numbers-

Here it is....
http://www.ccsvi.org/index.php/helping- ... ial-health
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby DrDiana » Wed Apr 20, 2011 9:21 am

Cece wrote:
DrDiana wrote:
Cece: Here's a pre-CCSVI thread with "pics of spotty bits." Cheer really knows her stuff. I was not around back then.

www.thisisms.com/ftopicp-44754.html


Wow. You guys have already been there, done that. I'll know to check out the threads first, next time!

I think of it as being like a party here, just because a few people had a conversation at the start of the night doesn't mean another group can't have a similar conversation later. We should learn from what has gone before but not to the extent that we shut down the current conversation when it is new to us!
I developed a new level of respect for viruses that day...

What a story. Glad that he is ok.


Thanks so much, Sweet Cece. Who doesn't <3 a party? And you are right, it can help to pull out these discussions and update our knowledge. I just hate the thought of pulling folks down ("Jeez, another Newbie who SO missed the first half of the party.") :roll:

And thanks, I was 9 months pregnant when that happened to my hubby and was picturing myself as a single mom there for a while. Thank heavens, I didn't have the ability to google what the docs were worried about back then (14 years ago)!
:wink:
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 bluesky63 » Wed Apr 20, 2011 9:24 am

I am not sure if this addresses the ear question, but . . . my son was initially dx'd with Ehlers-Danlos because of his ears. We were went to a geneticist because of his hearing loss. His ear specialist suspected otosclerosis and had mentioned surgery. To our surprise, the geneticist came up with EDS and said the joints in his ear caused a fluctuating conductive hearing loss and under no circumstances should we consider surgery. He still has various hearing issues (and other issues) and is a challenge. I wish I knew where to take him.

I have had repeated vertigo, flcutating hearing loss, etc. to the point of near-contant nausea and occasional vomiting. I was dx'd with labyrinthitis before my MS dx. Later one ear specialist told me I had central tinnitus from MS and another said I had hearing loss from MS (which, incidentally, the CCSVI fixed, during the procedure, in the OR).

Mixed bag. Par for the course.

OK, beyond ears . . . my most dramatic "spot" incident was a few years ago when everyone thought I was dying because I came up with hideous purple spots, a fever, and severe head pain, joint pain, muscle pain, swollen nodes, and weakness . . . it turned out I had serum sickness from an infusion the week before. Miserable experience!
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Postby PCakes » Wed Apr 20, 2011 9:34 am

DrDiana wrote:PCakes! So nice to "meet" you! I <3 your name and avatar, and am unable to look at either without smiling.
:)
DrDiana wrote:YES!!! EDS and inner ear disorders!!! My sister was also diagnosed with Meniere's
wow!
DrDiana wrote:http://www.hear-it.org/page.dsp?page=1841
thanks!
DrDiana wrote:Can you bookmark PrettyIll dot com?
will do!
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'.

We all have the red spots.. my doc calls them 'cherry angiomas'?

:)pc
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