From Rindfliesch's discovery of the central vessel in the MS lesion in 1863, to CCSVI and the CNS lymphatic discovery. 160 years of research on blood flow, CSF, lymph and perfusion of the central nervous system. Because the heart and the brain are connected.
Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of the endothelium and heart-brain connection. 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 auto-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
Saturday, November 18, 2017
Exciting New MS Treatment!
A new MS drug appears to alter fluid dynamics and repair the blood brain barrier!
In fact, 63% of the patients treated with Perfuza (toxicmuzab) had no new or enhancing MS lesions at 12 months! In light of recent discoveries of the brain's lymphatic vessels and the connection to venous flow, we are thrilled to be able to offer MS patients a drug treatment which may be addressing CNS fluid dynamics.
Here's more on the impressive results of Perfuza from a recent publication in JAMA---
We found a reduction in the mean number of new brain lesions (corresponding to more lesion- free patients) in the toxicumab group compared with the placebo group at 6 to 12 months. The delayed and positive effect on the magnetic resonance biomarker suggests that toxicumab could affect the dynamic of the blood-brain barrier.
Gadolinium enhancement is a marker of damage to the blood-brain barrier, whose time course depends on lymphatic drainage18 and hence on venous drainage from the skull.19 Previous studies have reported that venous pressure is lowered3 and cerebrospinal fluid dynamics is improved20 after taking toxicmuzab, thereby favoring the drainage of cerebro spinal fluid into the dural veins, which depends on a pressure gradient between the subarachnoid spaces and dural veins.21,22
Another study23 reported that white matter lesion load was inversely correlated with reduced cerebrospinal fluid dynamics, as measured by MRI. In addition, flow improvement through the internal jugular veins owing to toxicmuzab has been reported to improve brain perfusion in patients with RRMS.21 It has also been reported that the development of a new MS plaque was preceded by sustained MRI-detected hypoperfusion before the plaque was identified on MRI.24,25
Incredible, right??? Finally. A drug which can potentially affect the blood brain barrier!
Perfuza (toxicmuzab) may be the greatest money-making MS drug in history.
Projections are now at 2-3 billion for 2018 alone.
The paper I'm quoting from, verbatim, is the recent JAMA review of angioplasty for CCSVI from the Brave Dreams clinical trial.
Just replace my made up block buster drug Perfuza (toxicmuzab) with angioplasty to restore venous flow. And then, write a conclusion and snarky editorial that says that we should not pursue this treatment any further, and that CCSVI research is over.
Even though the conclusion of the paper says that over half of patients saw benefit in cerebral blood flow from CCSVI treatment.
The editorial which goes along with this publication is actually incorrect. The author of the editorial, Dr. Ari Green***, claims that there was absolutely no benefit in those treated for CCSVI, that there was no reduction in new lesions. Here, read the editorial for yourselves, and read the paper again, and tell me---isn't this incorrect?
***Dr. Green has received personal compensation for activities with Inception Sciences, Mylan Pharma, Medimmune, and Bionure. Dr. Green has received personal compensation for serving on the board of Inception Sciences. Dr. Green holds stock and/or stock options in Inception Sciences. Dr. Green has received research support from Inception Sciences, Biogen, and Novartis. link
Dr. Green's Inception Sciences Company owns the patent for an antihistamine-like molecule thought to remyelinate neurons. I wrote about the absurd hype regarding a 1.3% improvement in visual acuity here: link
To recap---this published paper from the neurologists of the Brave Dreams trial just proved, conclusively-
1. CCSVI is a real condition in people with MS.
2. There are a variety of venous malformations. There were patients with closed jugular valves, refluxing blood flow, and hypoperfusion.
3. Venoplasty was able to restore normal flow in 54% of the patients. Not all malformations can be treated with PTA alone.
4. 63% of treated patients had no new MS lesions on MRI at 12 months.
Doesn't this count for something? At least additional study?
What is real news? What is fake news?
Is this simply spin or is it something darker?
If a room full of neurologists look at the results from CCSVI venoplasty and conclude
"The delayed effect of venous PTA 6 months after the procedure on the magnetic resonance biomarker suggests a possibility that PTA may produce benefit for a subgroup of patients with MS. This should be further analyzed and investigated."
yet still write a conclusion and editorial suggesting CCSVI research be stopped--- what is reality?
Please, tell me. Honestly, I'm flummoxed.
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You are so right, Joan. Thank you for writing this.ReplyDelete
you bet, Marie....can't believe it's been 10years of obfuscation by neurologists.Delete
The published research actually shows:
1. CCSVI exists
2. CCSVI impairs venous flow
3. Treating CCSVI improves fluid dynamics and stops lesions.
4. Neurologists prefer to ignore the facts, and protect their money and turf.
love to you.
Yes, you have that knack of getting right to the core of it! Love to you right back, dear friend... :-)Delete
Yep. But we have to keep pushing past bs pharma greed. I see how it is, and it still really hurts that no one will care for me (us) and we are on our own. But soon the people of integrity such as you, the Embry's, Dr. Zamboni, Dr. Wahls.. will reach the tipping point in our favour.ReplyDelete
I care for you, Sheryl. And we all care for each other. Yes, there are many good doctors and researchers who will come to uncover the mechanistic workings of the brain's lymphatics and vasculature. Along with the ones you mention, we have Dr. Michal Schwartz, Dr. Jonathan Kipnis, Dr. Maiken Nedergaard ---all those who are asking the big questions, beyond pharmacology, and into the actual functions of cleansing and perfusion of the brain. Live your best vascularly healthy life--more ahead.Delete
I know you do Joan, profound Thanks. Exciting times ahead if we can just hang on ...Delete
Joan thank you always for your honesty . Always speak out .ReplyDelete
Thank you dear Joan for always keeping your chin up and finding humour in everything. What a strength of character.....sure wish I had that most days.ReplyDelete
I'm glad I read the entire "story" - I was going to make a Doctor's appointment Monday to get this new drug !!ReplyDelete
CCSVI treatment didn't work for me in 2010, and a stroke in 2014 really messed up my autonomic system. Despite all that it just seems to make sense that an issue with blood flow (or lack thereof) must be a problem. Anyways, in addition to this "fun" article, so glad for your additional input on the seemingly failed Brave Dreams paper. Thank you, Eleanor Roberts.
Hi Eleanor--so sorry you did not receive benefit from CCSVI treatment, and had a stroke. I'm assuming you've been tested for antiphospholipid antibody syndrome (Huges Syndrome) ? Hypercoagulation can be an issue for some diagnosed with MS. The Brave Dreams trial is only the beginning....we've just recently discovered the brain's lymphatic vessels. Hard to say CCSVI research is "over"---just because neuros want it to go away!Delete
Thank you Joan. You show us the truth easily understood. Love always xoReplyDelete
thank you JoanReplyDelete
Well I was going to have my ccsvi done again with stent this time with Dr. Salvatore in couple of weeks.ReplyDelete
I guess I need to make some changes to that.
First of all this is my first comment and I'd like to congratulate for your excellent research. I'm very impressed.
I'd like to know your opinion about the studies showing the inefficacy of the venous angioplasty (this one for example: Efficacy and Safety of Extracranial Vein Angioplasty in Multiple Sclerosis: A Randomized Clinical Trial, https://www.ncbi.nlm.nih.gov/pubmed/29150995).
Do you think this is because MS can have multiple origins? In the Sardinia study CCSVI was quite effective probably because in that island MS had all the same origin (venous abnormalities)?
I really look forward to have your opinion here!
Thanks in advance.
Hi Ricardo---There are so many variables in slowed venous flow, you are right. There could be vascular issues (valves, stenosis, hypoplasia) or bony issues from the atlas, or viruses/bacterial infections causing endothelial cell dysfunction, or lack of exercise and shear stress, or bad eating habits, or lack of UV rays....the list goes on. CCSVI venoplasty alone will not be the answer. We need to look at each individual patient and find the root cause of restricted venous flow. It will take more than a simple treatment. My husband has combined nutrition, exercise, stress reduction, sunshine exposure, in addition to his venous stenting. And this multi-modal approach has worked for him, reversing MS disease progression. We'll get there. The vascular connection to MS is real, but it is not simple, nor addressed with a pill.ReplyDelete
also--interesting that you mentioned that Sardinian study, as this is where Dr. Zamboni's venous malformation studies began in 1990. He noted venous irregularities in many there, and followed these patients. Many of these patients developed MS years later. http://journals.sagepub.com/doi/abs/10.1177/026835559000500110?journalCode=phlaDelete
Thanks a bunch for your reply!Delete
I believe more and more that MS is a vascular and not autoimmune disease... Chilblains or ischemic strokes prior to disease can testify that.
You bet, Ricardo! It was my husband's serum results at diagnosis w/MS that sent me down this vascular path (high SED rate, high Crp, high AST and ALT) You may be interested in joining the International Society for Neurovascular Disease (ISNVD), as they are doing some terrific publishing on the vascular connection to MS. https://isnvd.orgDelete