This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi to all,

first of all, I have my MS diagnosis since 2004, had about 15 relapses since then, remission incomplete.

I've been reading about MS as a vascular disease and want to ask you something. This year I have noticed some strange blood spots emerging spontaneously under the skin. They are not bruises, I have not hit myself with anything. They come and go, sometimes here, sometimes there - randomly.

Some pictures:





I've had my blood coagulation time tested, the INR result came back 1.2, which is the upper limit of reference range, so this shouldn't be because of slow coagulation directly (http://en.wikipedia.org/wiki/Reference_ ... oagulation).

Now my question. Does anyone know what this could be? Anyone had some similar experience? What could be (was) the cause?

Ok, now just some more pointers:
http://www.nhlbi.nih.gov/health/dci/Dis ... hatIs.html (this could be it)
http://en.wikipedia.org/wiki/Idiopathic ... ic_purpura (note the H. Pylori part)

Any opinions, suggestions? Thanks a lot...

Hi Damjan-
My husband has the same markings, but lots of them. His docs call them petechiae from Schamburg's disease and say that they are benign and not related to his MS, but they appeared on his shins, feet and forearms at presentation of his first MS flare last year. I think it's more than coincidence. More appeared this past spring after his second MRI. I had thought maybe it was a reaction to the contrast dye, but we have no evidence of that. Have you had an MRI with contrast recently?

He was tested for ITP (purpura) and got a negative on that test, his platelets are fine, but his SED rate was way high. His doc wants more blood testing to look into rheumatory issues, but I haven't been able to get him into the doc's office this summer...we've been vacationing and he's trying to forget the whole MS thing. Not easy to do, but denial seems to help him. He's been relapse and progression free.

The red spots have since turned a coppery color, and are sprinkled along his shins and forearms...they almost look like cayene pepper spots or freckles, but they were red first. He also bruises like a peach, and broke a blood vessel in his stomach from a copax injection. The bruise looked like something out of a scifi movie...purple, yellow and green.

Will let you know if I come up with any more info from blood tests. Must get him in to the doc's! Could be so many things...but I think it's all connected to MS and the vascular system.

Also, have you been tested for Antiphospholipid syndrome? (Hughes Syndrome) can sometimes have purpura as part of this disease-usually goes along with lupus. Can look alot like MS-

good luck!
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

"People who develop Schamberg's disease have leaky blood vessel walls which allow red blood cells to slip through into the skin. The red cells in the skin then fall apart and release their iron which has a rust color. This accounts for the orange tint of the rash."

Leaky blood vessels sure sounds a lot like what they've found with those 7 tesla MRI's.

This is one of those things I am gonna assume smarter people then us are studying already.

(If I start down the googling path I know I will be sitting here for the next couple hours but...)

UT faculty members find aid for leaky blood vessels

Leaky blood vessels open up nerve cells to toxic assault in Lou Gehrig's disease

A leaky blood-brain barrier, fibrinogen infiltration and microglial reactivity in inflamed Alzheimer's disease brain.

Thanks, rainer.
You saved me an hour of googling

Yeah, I had a feeling Jeff's Schamberg's wasn't "benign." I love how the docs write off anything they don't quite get as benign. I'm sure my husband's MS and Damjan's MS and their blood vessel issues are related. I'm sure the leaky blood vessels have something to do with the spots- and the lesions in their brains and spine.

Check this out..from the abstract you posted...

"The defibrinogenating compound, ancrod, reduced inflammatory reactivity, levels of parenchymal fibrinogen and IgG, and was neuroprotective. "

Ancrod is is a defibrinogenating agent derived from the venom of the Malayan pit viper. It's being tested for use in stroke patients. Might help some MSers? Let's hope those smart people are on it....
Yup- they are. In San Diego back in 2004...wonder what has happened to this?

"Multiple sclerosis is a nervous system disease with vascular damage, resulting from the leakage of blood proteins, including fibrin, into the brain," said the study’s first author, Katerina Akassoglous, Ph.D., a UCSD School of Medicine assistant professor of pharmacology. "Our study shows that fibrin facilitates the initiation of the inflammatory response in the nervous system and contributes to nerve tissue damage in an animal model of the disease."

In addition to the genetic deletion of fibrin, the researchers tested drug-induced fibrin depletion, which was accomplished by administering ancrod, a snake venom protein, to the transgenic mice. Consistent with the genetics-based experiments, the pharmacological depletion also delayed the onset of inflammatory myelin destruction and down-regulated the immune response. Previous studies by other investigators who used ancrod in experimental autoimmune encephalomyelitis (EAE), another animal model of MS, also showed amelioration of neurologic symptoms.

http://www.thisisms.com/article94.html

thanks,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi Damjan,
They certainly resemble ITP, and MS as a vascular disease has been discussed quite a few times on this website. My torso has a couple of clusters of markings similar to this except they are not purple and they don't appear to be temporary: they are bright scarlet and have been there for a few years; they look as if I have been dotted by a red felt tip pen. I showed my doctor because we have a family history of skin cancer so I was quite relieved to hear that they are " only" leaking blood vessels under the skin.
However, if blood vessel walls are weak enough to leak inside an organ as tough, resilient and regenerative as the skin, just think of the havoc they could wreak in something as delicate as the brain,

_________________
Dom

Funny how they know enough to tell us we're wrong but can't explain or treat the disease.

OK guys,
because I just can't accept that all these leaky blood vessels are benign...
I realize the docs aren't bothered by it, because the text books say it's "harmless." But Dom is so right about the havoc wreaked in the brain.


http://dermnetnz.org/vascular/capillaritis.html

I wanted to see if there was anything out there to help improve blood vessel integrity. Came upon procyanidolic oligomers (PCOs) Turns out this is a natural compound which has also helped strengthen the BBB.


http://www.diet-and-health.net/Diseases ... ility.html



http://www.ncbi.nlm.nih.gov/pubmed/11428165

So, I'll see if I can help Jeff get rid of these petechiae with some PCO supplements. Will probably report and follow up on the natural or supplement thread.
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I've read that grape seed extract is a much better source of proanthocyanidins than pine bark extract.

NHE

This document is quite dense to read:

http://www.plosone.org/article/info%3Ad ... ne.0003037

But basically it says this: T cells, specifically CD8 T cells, use a protein called perforin as part of their weaponry. Perforin punches holes in the membranes of enemy cells in order to kill them, but it also loosens the tight junctions between endothelial cells without actually killing the cells themselves – therefore this sounds like a mechanism where T cells, perhaps activated by a viral or bacterial infection or physical trauma, can substantially compromise the BBB and allow penetration of blood product infiltrates.

On the whole, this seems to draw together quite a number of theories that have been hanging around for years: leaking BBB; inflammation; bacterial, viral or physical trigger; T cell involvement etc. Anything which stimulates large numbers of CD8 T cells to accumulate, (the level of which may be governed by genetic makeup), might begin the process, which could also explain why there appear to be so many different triggers for relapse.

Just a few wandering thoughts… these marks on the skin really could be a sign of something going on much deeper,

_________________
Dom

I so appreciate your "deep thoughts", Dom. That was a fascinating document. The fact that vascular permiability is so hard to capture on MRI (until those new Teslas, rainer!) would explain why it has been overlooked as a hallmark of MS.

Your clusters of spots remaining bright red might signal that the opening of the vessel cells is continual, and not healing. Jeff's have turned light orange, and continue to fade....but were bright red at his first flare, suggesting a temporary sealing off. This might explain the relapsing/remitting phase of his disease, and your dreadful progressive disease state.

I've read about petechiae and purpura on other MS boards....people attribute them to viruses, rashes, Herz reaction- but not everyone has them. You and Jeff share many things...a history of red hair, musical talent and a propensity for skin cancer. And these spots.

I'll look into the grape seed extract, NHE-
best,
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hello Cheer,
I like your thinking, especially about the difference between RR and PP MS reflecting the different behaviour of these marks. One of my carers took a picture of mine with her phone, but it's a bit poor and the bright red colour doesn't show up at all well– in the photo they don't look much different from the nearby, larger, mole – but this thread has prompted me to try an experiment. I've ordered a grape seed supplement, (it's now official: I actually contain more supplements than the Sunday papers), and if they begin to fade I'll let you know.
[img][img]http://i149.photobucket.com/albums/s65/TwistedHelix_photo/Photo-0067.jpg[/img][/img]

_________________
Dom

dom those spots are cherry angiomas and i asked my doc about mine and she said no worries, just part of getting older. i looked into it at the time and i had an answer but i forget what it was! my last mri came back with mention of some kind of angioma on my spinal cord too so, things that make ya go hmm.

zinc status and permeability go hand in hand, by the way. oh, here we go with a little google binge...

Effect of zinc supplementation on intestinal permeability in experimental colitis
http://cat.inist.fr/?aModele=afficheN&cpsidt=13709315

Enteric protein loss and intestinal permeability changes in children during acute shigellosis and after recovery: effect of zinc supplementation.
http://www.pubmedcentral.nih.gov/articl ... id=1375257

Zinc Deficiency Exacerbates Loss in Blood-Brain Barrier Integrity Induced by Hyperoxia Measured by Dynamic MRI
http://www.ebmonline.org/cgi/content/full/223/2/175

The Antioxidant Function of Dietary Zinc and Protection Against Neural Disorders
http://lpi.oregonstate.edu/ss03/zinc.html
(don't run screaming when you see LPI lol!)

wow, i finally found a full-text copy of this:

Scurvy Presenting as Painful Gait With Bruising in a Young Boy
http://archpedi.ama-assn.org/cgi/reprint/154/7/732.pdf

the various issues were resolved by supplementation with ascorbic acid, zinc, and multivitamin.

interesting:
http://en.wikipedia.org/wiki/Purpura
Purpura measure 0.3-1cm, while petechiae measure less than 3mm, and ecchymoses greater than 1cm

http://en.wikipedia.org/wiki/Thrombotic ... ic_purpura
Classically, the following five features ("pentad") are indicative of TTP;[3] in most cases, some of these are absent.
# Thrombocytopenia (low platelet count), leading to bruising or purpura

Thrombotic Thrombocytopenic Purpura and ADAMTS-13
Structure, Biosynthesis and Genetics of ADAMTS-13
http://www.medscape.com/viewarticle/495084_3


and finally, a non-journal link (i'll get into the cherry angioma thing next post)

Six Natural Ways to Reduce Bruising
http://www.salubriouslife.com/salubriou ... l_way.html

Wow...so much info. Thanks, JL. So glad we've been doing the zinc supplementation. Love your Sunday paper quip, Dom!

From googling a bit, I learned the diff. between cherry angiomas and petechia is that angiomas will blanch (turn white) when pressed on, and the angiomas are a bit raised from the skin surface, and remain red. They appear to be scattered about the trunk. Angiomas are caused by dilated blood vessels.

The petechiae Jeff has stay dark when you press on them (pressed with a glass), they are flat, and run up and down his shins and arms in dense clusters. Petechiae are caused by ruptured blood vessels. They started out bright red and kind of look like freckles now, since the blood is reabsorbed and the iron remains.
Here's what Jeff's legs look like.... (well, he has nicer legs, actually)
http://www.visualdxhealth.com/adult/cap ... mptoms.htm

Seems like they are both vascular issues, and I'm not sure how they can be benign in people with MS. Let us know if the grape seed extract helps them fade, Dom-
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

now you've got me squishing my belly to see if my polka dot turns white! (it does). dom, yes please do let us know if the grape seed clears up your spots.

Thank you so much for all that information… I wonder if my doctor avoided using the word "angioma" because he knows that words ending in "...oma" tend to freak me out a bit, (with the possible exception of " Oklahoma").
My carers have been giving me funny looks just lately: first I ask them to take pictures of my spotty bits; now I'm going to have to ask them to press a glass against my body... I've tried to explain that it's all in the name of research, but I think they're beginning to wonder exactly what kind of websites I'm looking at all afternoon!
If the extract does anything, you'll be the first to know,

_________________
Dom