Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Sunday, March 2, 2014

Blood Matters

Seven years ago, when Jeff was diagnosed with MS, I asked his neurologist why his blood was hypercoagulated.  Why were his fibrinogen, c reactive protein, pro-thrombin and SED rates so high?  Why did he have all those tiny blood spots on his legs?  She replied that she didn't know, since it "had nothing to do with his MS."

But seven year later, we know that wasn't true for him, and it's apparently not true for other people with MS.

Blood matters.

After Jeff's diagnosis I went to the library and read medical journals online. I read Dr. Roy Swank's research, and saw he noted this blood vessel breakdown, as evidenced by what he called, "capillary fragility" on the limbs of his MS patients during their relapses, manifesting as blood spots called petechiae.  (see pic below.)   He saw hypercoagulation in their serum, too.    Dr. Swank knew it mattered.  In 1958, he saw what I was seeing on Jeff's legs in 2007.


Additional evidence that blood vessel fragility may be an important aspect of MS derives from Swank's study in which he concluded that MS is not confined primarily in or localized to the CNS: He observed small cutaneous hemorrhages in 77.4% of female patients observed repeatedly over a 5-9 year period. In 66.7% of these patients, the hemorrhages were spontaneous. `Biopsies of 5 spontaneous hemorrhages, where trauma could be confidently ruled out, revealed extravasated red blood cells infiltrating the deeper layers of the derma and the subcutaneous fat.' Swank goes on to state that `a number of patients have described petechial hemorrhages in large numbers after having their blood pressure taken both under and distal to the cuff.' He notes that the petechial hemorrhages are similar to sub- cutaneous hemorrhages seen in capillary resistance studies.   
Swank RL. Subcutaneous hemorrhages in multiple sclerosis. Neurology. 1958; 8: 497-498.

Jeff's hypercoagulation and petechiae were related to his MS.  Dr. Swank did not have the science of nitric oxide as EDRF in his time, but modern researchers have since connected hypercoagulation and clotting proteins as evidence of endothelial dysfunction and a break down of the blood brain barrier, and activation of the coagulation cascade.  This research comes decades after Dr. Swank's discoveries, but confirms what he saw as "blood vessel fragility."  We now know that endothelial dysfunction and a break in the BBB will affect the blood through out the body.  Once the coagulation cascade is activated, it is systemic.  And these extravasated red blood cells will leak and appear throughout the body.  Just like Jeff's petechiae--and the break in his blood brain barrier.

The disruption of integrity of the walls of brain blood microvessels rapidly activates the coagulation cascade. 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3268209/

The coagulation cascade plays a major role in the development of an inflammatory response in MS.
http://circres.ahajournals.org/content/110/9/1157.extract#

Other researchers have noted hypercoagulation and high fibrin levels in the blood of pwMS for decades.  But these markers have been largely ignored.  Until recently.
Here's more on this research--

A protein involved in blood clotting may be a new indicator to help detect multiple sclerosis (MS) lesions before symptoms arise. The presence of the clotting protein, thrombin, signals an early stage of the disease when the blood-brain barrier is breached and the brain’s immune response is set into motion. The research was presented at Neuroscience 2013, the annual meeting of the Society for Neuroscience and the world’s largest source of emerging news about brain science and health. 

The researchers found that thrombin, usually a beneficial protein involved in blood clotting, builds up in the central nervous system as MS progresses. Thrombin enters in the brain together with fibrinogen, another clotting protein when the protective barrier between the blood and brain becomes leaky. Thrombin converts the fibrinogen to fibrin which activates brain’s immune cells that break down the protective myelin sheath that surrounds neurons in the central nervous system. Because thrombin levels increase as the disease progresses, the researchers conclude that it could be used as an early detector of the disease. 
http://www.bioquicknews.com/node/1420

More researchers are noting this break in the endothelium, and detecting these microscopic bleeds in the MS brain.  At the ISNVD conference, Dr. Yulin Ge recently discussed how 7T MRI technology is allowing us to see tiny hemorrhages in the MS brain which occur before demyelination.  This further elucidates the microvascular connection to MS.
From his abstract at the ISNVD:

Being the most common demyelinating disease of the central nervous system, multiple sclerosis (MS) MS has a significant microvascular pathological component as a consequence of the perivascular inflammation. The role of vascular pathology in MS was suggested long ago. Now there is accumulating evidence of a primary vascular pathogenesis in MS. In vivo studies of vascular and hemodynamic impairment in MS may provide insights into the etiology and pathophysiology of MS and offer the potential metrics for assessment of outcome of the disease. 

Canadian microbiologists have recently published a paper on the iron around MS lesions, and link it to the vasculature and "chronic extravasation of hemoglobin", or microbleeds causing oxidative stress in the brain. 
http://www.ncbi.nlm.nih.gov/pubmed/24504127

Dr. Zamboni saw the parallels of venous disease of the legs and MS, and wrote about iron deposition and the inflammatory response in his 2006 publication,
The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633548/


These researchers would tell you that blood matters.  When red blood cells enter brain tissue, there are serious repercussions--including oxidative stress, inflammation, iron deposition and an upregulation of clotting proteins.   Why does the blood brain barrier become leaky, and allow plasmic particles access into brain tissue? The exact mechnism is not known, but it appears to be related to endothelial dysfunction.  It may be venous hypertension, lack of shear stress, and hypoxic injury created by CCSVI which is compounded by environmental factors like diet, exercise, stress, UV rays, viral and bacterial infections and smoking.  We need more research.

MS researchers ignore this connection at the peril of their patients' brains---and lives.
I'll keep writing about it, until the day when neurologists understand the connection of the red blood spots I saw on Jeff's legs, the lesions in his brain and spine, and his MS diagnosis.
Joan









27 comments:

  1. thank you so much or work and dedication

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    1. You are welcome, Valid! I hope this information might help others. I keep writing --for our children and grandchildren, in the hopes MS research will teach us more about how to stop this disease process. Take care!

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    2. I too have petechiae all over my torso and upper arms, only a few on my legs, and have had MS for around 30 years. My daughter is now going through investigation for MS, so I am hooking you up with her if she IS diagnosed. You are the shrine in the desert, slaking our thirst for real knowledge. Thank you thank you

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    3. Dear Saskia--sending prayers for you and your daughter. There is so much you can both do to remain healthy and hopeful. Strenghten your endothelium (the lining of your blood vessels) and do it together. http://www.ccsvi.org/index.php/helping-myself/endothelial-health

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  2. All my life I have wondered what these red dots were for I was alarmed when as a teenager (18) I found similiar looking red dots on my chest. I attributed it to drinking too much alcohol that week-end with my friends. Thank you so much for this article. I was diagnosed with MS at the age of 39. Had CCSVI 3 years ago; totally changed my life. I am just now considering having it done again. I have also had proplems with the veins in my right leg only. Wow..just wow

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    1. Hi Laurel. Yup, those are called "petechiae" and are related to leaky blood vessels, also called endothelial dysfunction. Dr. Swank would tell you to watch you fat intake--stay clear of transfats and processed foods. And bossy old me wrote up a whole program for my husband, to help him heal those spots on his legs, and in his brain. He's doing great, seven years later, no MS progression. Here's the program. Hope it helps! Keep moving and stay well. Joan http://ccsvi.org/index.php/helping-myself/endothelial-health

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    2. (Google Translate-English Italy) My Idea, maybe genius or perhaps stupid. The same red dots on the skin, you are applying for a few minutes, directly on the skin, an ovoid shape made ​​from a large leaf of agave or Agave Americana European all green, because it contains natural cortisone that our adrenal glands but, in case of potential MS, is excessive, THEREFORE, in these cases, it would be better to go to investigate the possible super-activity of the adrenal glands, measuring and / or detecting the cortisone in circulation! ; ITALY : Mia Idea, forse geniale o forse stupida . Gli stessi puntini rossi, sulla pelle, si hanno, applicando per pochi minuti, direttamente sulla pelle, una forma ovoidale ricavata da una grande foglia di Agave Americana o agave europea tutta verde, perché contenente CORTISONE Naturale, che le nostre ghiandole surrenali producono ma, in caso di potenziale SM, in modo eccessivo, QUINDI, in questi casi, meglio sarebbe andare ad indagare sulla eventuale super attività delle ghiandole surrenali, misurando e/o rilevando il cortisone in circolazione !!

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  3. Joan I had this as a child the doctor's said it was Itp. This all makes sense now thank you.

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    1. Hi Emily--if your spots were ITP, or idiopathic thrombocytopenic pupura--that would be something confirmed with blood tests by your doctor to make that diagnosis. He would have seen antibodies in your blood after a bad viral infection. This happens to kids after chickenpox, and decreases the number of platelets in the blood...and usually clears up on its own. ITP is different than the petechial rash on my husband's legs--his came without virus, suddenly with his MS flare and was related to hypercoagulation. Hope that helps explain the difference. Take care!

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  5. Joan, I have MS. I got blood work done and my level of Hemoglobin is high. I know that it is recommend for people with high level of Hemoglobin to donate blood. I wonder if donating blood in my case (given that I have MS with a high level of Hemoglobin in my blood) would be a good thing. In other words, would it lessen the micro-bleeds causing oxidative stress in the brain as mentioned by the Canadian Microbiologist, in his recently published paper, on the iron around MS lesions?

    http://www.ncbi.nlm.nih.gov/pubmed/24504127

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  6. Hi, Kenny, I don't think anyone with MS should donate Blood. Nobody knows what causes MS so nobody knows what you might be donating. And we already know that some MS is misdiagnosed Lyme. And Lyme is not something you would want to donate to anybody. Brian

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  7. Hi Kenny--Having high hemoglobin (or a higher than average amount of the protein that is the main part of our red blood cells, and is responsible for carrying oxygen in the body) can certainly complicate this issue with your MS. I really do not know if donating blood would effect endothelial dysfunction --but it certainly known to reduce the amount of iron in the blood itself, and could reduce oxidative stress. All good things.

    There are lifestyle factors that raise hemoglobin which you should look at, as well--don't smoke, don't take anabolic steroids, make sure to stay hydrated. All of these factors can raise your hemoglobin levles. I'm not a doctor-- the best thing to do is talk to you doctor about why this is happening for you---is it hereditary? Do you live at high altitude? Do you have heart or kidney issues? But you really need the consult of a smart physician. Do your homework, get recommendations.

    And in the meantime--do all you can to stay healthy by eating well, reducing stress, and moving. I wish you well!!

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  8. Also---to Kenny and Brian--you would not be "donating" your blood for others to use, per se. But you would be having blood removed, also called blood-letting (phlebotomies)--this can be hellpful, and is done in a doctor's office, as an outpatient procedure.

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  10. Joan, thank you for your intake. I'm glad I've come across your posts and asked the question. I certainly don't smoke, and I keep myself hydrated. I don't know of anyone in my family having a high level of Hemoglobin; and I don't live at a high altitude. My heart and Kidney are well. I remember when I went on Rebif for a month, and then Copaxone for two months after I was diagnosed with MS, I think my kidneys were compromised, because I used to feel pressure on my lower thoracic spine area and my feet were always swollen.

    I stopped taking MS drugs because of their horrible effects I experienced. Right after that -- about three years ago, and about a year after my diagnoses -- I got my CCSVI done in Union, New Jersey, by Doctor Eric Delaura, who is an Interventional Radiologist. The CCSVI Procedure helped me to an extent. When I got my CCSVI, I was in a Secondary Progressive Stage of MS. I was constantly fatigue having gate complications; and, I had difficulties lifting my legs due to pain and muscular tension.

    However, about 24/hrs after having my CCSVI, my fatigue was reduced; and, I was able to left my legs with less strain. The results motivated me to go back to the gym to work out and improve my health. As I started working out, I, along with it, started doing Anabolic Steroids; and I noticed positive results. My gate got better and my walk improved immensely. In addition, Anabolic Steroids helped in toning up my body and defined it with a vascular look .

    Irrespective of the great results I experienced with Anabolic Steroids, what mainly trigger in me wanting to stay active is the maintenance of my health. I just don't want to allow myself crashing by neglecting on my health. When it's time for me to head to the gym, and I'm asked where I'm heading, I say it with assurance, and I mean what I'm saying: "I'M GOING TO SEE THE DOCTOR." I realized that staying active is one of the best things I can do to maintain and improve my health.

    If truth be told, experiencing MS made me realize my susceptibility to the condition. For that reason, all I'm doing -- which includes taking Anabolic Steroids -- on and off -- responsibly, and in orderly cycles -- is countering MS as much as I could. But now that you told me Anabolic Steroids raise the level of Hemoglobin, and I know iron deposits in the brain impairs the Myelin Sheath covering the nerves, I will no longer take Steroids again.

    Having said that, here is where I'm at with MS after CCSVI: My over all well being have gotten better; and I even look better. Yet still, there is room for improvement. At times, especially when I break a sweat at the gym, I experience difficulty when I walk, and I have to put so much effort to keep a good gate. It doesn't look too friendly when I'm all pumped up and walk like I'm swaggering. I'm 46 and well mannered. It's just that during such stance my awkward mobility makes me look thuggish. So, I'm definitely still sensitive to heat. When I'm not sweating...

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  11. ...When I'm not sweating, and when the temperature is fair (i.e. not too cold and not too hot), my gate and mobility are phenomenal. So at times, I can walk straight and fast that my wife, who's very energetic would have hard time keeping up with my pace. The other thing, which is really embarrassing as it is the case with everyone diagnosed with MS, I can't control my Urine. When I feel the urge, I don't think twice about heading to the bathroom.

    Another thing which is linked to my condition is that I lost the ability to run; and I still can't run. When I do cardiovascular work out at the gym, I use the elliptical machine. I do workout on the elliptical so well that I look like I'm dancing on it; that's how good I do it. In short, after I got my CCSVI done, I certainly got better; but, I can't say that MS has completely left me. O, and it's worth mentioning, as it adds evidence to the vascular theory of MS, I was also diagnosed with "Vasculitis," which is Inflammation of the Blood Vessels.

    That's that; and thank you again, Joan. Thank you for taking the time and effort to partake and reply, as this shows how compassionate you are and how much you really care. Continue doing what you do best in keeping those diagnosed with MS and those of concern informed and updated with all the helpful information. What you're doing certainly creates awareness and surely contributes to getting closer to discovering a way or perhaps ways to treat the condition effectively and perhaps provide effective measures to prevent it from manifesting.

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  12. Brian, thank you for your hints. I'm aware that no one has really hit the mark in pinpointing the cause(s) of the signs and symptoms of what's referred to as being MS. Every human being is an entire world with intricate nuances to the molecular level. About a year ago, I watched "Under Our Skin -- The Hidden Story of Lyme Disease," which brought awareness to me of how the tic plays a role in the outward signs and inward symptoms of what we're told to be MS. For that, just in case I have Lyme disease, I will make sure that I don't donate blood; and I will instead do as Joan mentioned: "Blood-Letting (Phlebotomies)."

    However, my MS signs and symptoms could be caused by Lyme, because in 1992, I remember getting bitten by a deer tic, which stayed on my chest for almost 24/hrs before I pulled out the head of the tic. Back then, I really didn't know how harmful the tic is; and so, I did not care about going to see a doctor. When I got diagnosed with MS,I tested myself several times for Lyme; and every time the test came back negative. I need to find an LLMD; and I don't know if there is any around that's still allowed to operate.

    If you know of an LLMD around the Tri-State Area, I should be grateful if you email me his/her contact info. My email address is: kennydarwish@gmail .com.

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  13. Hé. .. I have got the same red spots on my belly and above there... I got MS too... though, my brother had equal spots, but not MS.... finally there's an explanation for the spots thanks

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  14. Hé. .. I have got the same red spots on my belly and above there... I got MS too... though, my brother had equal spots, but not MS.... finally there's an explanation for the spots thanks

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  15. Hé. .. I have got the same red spots on my belly and above there... I got MS too... though, my brother had equal spots, but not MS.... finally there's an explanation for the spots thanks

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    1. Hi Suus----these spots, called petechiae, are a sign that the lining of our blood vessels is not working. Also called "endothelial dysfunction." Here's a program I created to help my husband heal. It's beneficial for all, whether or not one has MS. http://www.ccsvi.org/index.php/helping-myself/endothelial-health

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  16. Again Joan you write so clearly, making difficult medical reports easier to understand. You also go further by explaining why life style is profoundly important to pwMS. Your research to help Jeff has helped thousands more. I believe there are many doctors who also have been helped by your research. I/we can never thank you enough for caring about all pwMS. Your brilliance and compassion give us understanding and HOPE. now, I hope you are coming to the CNHS CONFERENCE next weekend? 💖

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    1. Thanks for the encouraging words, Bev! Yes, I will be in Vancouver next weeked, and will look forward to catching up with you and getting a big <>!

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  17. Again Joan you write so clearly, making difficult medical reports easier to understand. You also go further by explaining why life style is profoundly important to pwMS. Your research to help Jeff has helped thousands more. I believe there are many doctors who also have been helped by your research. I/we can never thank you enough for caring about all pwMS. Your brilliance and compassion give us understanding and HOPE. now, I hope you are coming to the CNHS CONFERENCE next weekend? 💖

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  18. Per CONOSCENZA, per SIMILITUDINE CON LA SLA ed SM , Probabile potenziale patologia del Prof. Paolo Zamboni : https://www.youtube.com/watch?v=U4l34l717-w

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