This Is What Excites Me About Remyelination Therapy Research
Remyelination therapies are on the horizon as an innovative multiple sclerosis (MS) treatment, according to my neurologist. These therapies have been on my radar the last few years, but to hear my neurologist say they could soon be a reality makes me hopeful of the possibilities.
To offer a clear description of what remyelination therapies are and what they mean for those of us with MS, I first need to explain what MS is.
MS is a relentlessly devastating immune-mediated disorder of the central nervous system. In MS, the body turns on itself. It attacks and damages the myelin sheath, which covers axons, or long, threadlike nerves of the central nervous system. The result of these attacks is damage and exposure of the myelin and the axons. This invasion leaves behind a disrupted connection between the brain and the spinal cord.
The disconnection creates an array of varied debilitating and painful symptoms. What symptoms occur depends on where the damage is located on the spine and the brain. The cause of MS is unknown, although many theories exist. No cure has been discovered yet.
The hope for remyelination is that through drug therapy, myelin and axons can be repaired and replenished where damage has occurred. This treatment could greatly impact those with MS. If we were able to regain even a small portion of what we have lost, it would be life-changing!
A study abstract published in Nature Reviews Drug Discovery, titled “Remyelination therapies: a new direction and challenge in multiple sclerosis,” states that current therapies for MS are “predominantly immune-modulating and do not directly promote repair.” It adds: “White matter regeneration, or remyelination, is a new and exciting potential approach to treating multiple sclerosis, as remyelination repairs the damaged regions of the central nervous system.”
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Many clinical trials have tested new reparative therapies, the study notes. These trials are inspired by research in animal models that encourage remyelination, including studies that seek to repopulate oligodendrocytes, which are the central nervous system’s myelinating cells.
It all sounds very promising. But can it really happen?
According to the National Multiple Sclerosis Society, it is feasible: “Repairing the nervous system, in particular myelin, … was just a dream just a few years ago,” the society stated on its website. “Today it holds significant promise as a strategy to restore the function that MS has taken from people; and reducing or stopping MS progression.”
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Comments
Martin Matko
Ellminating the cause of the Symptoms of so caed Multiple Sclerosis will End MS and often when CCSVI is treated with Venous Angioplasty SymptoMS often Ease/Disappear including Fatigue, sleep apnea, gait, cognition and urinary issues, ect Ect ECT! FACILITATE AND MAKE AVAILABLE CCSVI TREATMENT RESEARCH!!!!
Debi Wilson
Hi Martin, Thanks for your comments. I have never heard of CCSVI but it sounds interesting. How did you hear about this? Have you known of anyone who has used this treatment and it worked well for them? Is it a risky procedure?
Gary R Fitzgerald
Debit. I am a MS suffer. Your article is encouraging. Do you know of any studies being conducted that I might be able to participate in? I'm 65, male and was only properly diagnosed in January of this year. I've been suffering for nearly 10 years. Please let me know your thoughts. I'm fighting hard to avoid a care home and a wheelchair. Gary Fitzgerald
Roanne
I agree with you 100%. I had CCSVI 7 years ago. I used a cane and a scooter on some days.
First days post procedure, I had no urinary incontinence, colours were brighter and I stood inches taller, without a cane or scooter.
I still do not use a cane, my MS is not as great as it was, but still better than 7 years ago before procedure.
I had priviously tried betasone, copaxone and tasabry. No remarkable differences observed.
Debi Wilson
Roanne, Thank-you for your comments and for sharing your experience! Debi
Christopher T
Debi,
Thank you for your post. Just a couple of things though.
First, CCSVI has been debunked as a very risky procedure that has nothing to do with the cause of MS or mitigating any symptoms. All of the results--positive and negative--are completely anecdotal. It was a highly speculative surgery developed by an Italian cardiovascular surgeon with absolutely no experience with multiple sclerosis.
As far as remyelination therapies, we're quite close on several fronts, with genetic engineering being the closest at hand. Unfortunately though repairing white matter (myelin) is much simpler than repairing gray matter (nervous tissue), if at all. Once the myelin is stripped away (and sometimes from the inside out), the axon underneath is a tube with many nerve fibers running through it, the nerve fibers can start to die. So remylinating axons with missing nerve fibers won't regenerate the missing nerve fibers. Even more frustrating is that doctors can't tell you if the nerve fibers are just heavily demyelinated, or if they're gone, because we can't just go opening people up to look. Only time will tell. Even replenishing OPCs won't bring back destroyed nerves.
Hopefully we'll get far with genetic engineering, because repair with stem cells is still 20+ years away or more.
Debi Wilson
Thank-you for your comments and information Christopher. It is good to gain all the information we can. My Doctor seemed very hopeful of the treatments coming soon, and that inspires me to remain hopeful as well. The best to you, Debi
Roanne
CCSVI was debunked because it was not effective in decreasing MS symptoms on every patient. The meds I have been on, betaserone, copaxone and tasabry only work on perhaps 30%.
It is not dangerous. It is the equivalent to an angiogram. The reported higher risk was when stents were used, and that is not the true procedure of Dr Zamboni from Italy, who was a surgeon who worked endlessly to find something to help his wife with MS.
I personally had CCSVI done in Rhode Island, post procedure I stood taller, no longer required my cane or scooter, my urinary urgency was gone and colour was more vivint. That was 7 years ago. I still do not use a walking aid. I am not as great as I was but I am still better than I was pre-procedure.
Pamela Karasy
Remember neuroplasticity, this may be the key. Neighboring neurons can learn/take over the function the dead neurons. I think remyelination plus neuroplasticity is the key for symptom relief. Then working with the immune system to stop it from attacking itself to lessen further damage.
Al
Hi Debi,
Thanks for the inspiring article. I love reading things like this that give us hope. The previous comment about ccsvi treatment in multiple sclerosis is very controversial and does not appear to be something that helps MS. Here is a link to the multiple sclerosis society's interpretation and information about the process and studies that were done.
https://www.nationalmssociety.org/Research/Research-News-Progress/Research-News/CCSVI
Debi Wilson
Thank-you, for your comments and sharing the link. I remain hopeful as well. My Doctor feels very confident about remyelination therapies, so
I am very hopeful in the treatments to come! Best wishes, Debi
Jerry
To my knowledge it's just opening up an artery with a balloon. Pretty cheap procedure. As far as hospital visits go. Been thinking about it it, myself
Debi Wilson
Thank you for your comments Jerry!
Best to you, Debi
Roanne
Jerry, go for it, it has changed my life for 7 years and counting. No more cane, scooter, fatigue, incontinence.
I had mine done in Rhode Island - good luck!
JAMES J. SAVIANO
CCSVI has nothing to do with arteries. It is venoplasty which is opening the veins that may be clogged twisted or have stuck valves. It is done very similar to angioplasty but instead of going into the artery through the groin it is done going into the vein through the groin. The blood returns to the heart to become reoxygenated through the veins. The purpose of CCSVI is to open the internal jugular vein and the azygos vein to allow proper blood flow from the brain back to the heart. Although CCSVI and MS have similar symptoms in many cases they are not related.
Debi Wilson
Thank-you for your comments James!
Best to you, Debi
ChristinaC Aivazoglou
Nothing excites me. Let the treatment prove that it works and then I will get excited. Also, make it available to us. Don't make us wait 10 years. All I get is disappointment because it says all this research is being done and really nothing is showing for it. Blah, blah, blah...
Debi Wilson
Hi Christina, Thank-you for your comments and I understand what you are saying. Even, the blah,blah,blah made sense!:) For me, It’s nice to know they are researching new avenues and I like to have something to be hopeful about. Best to you! Debi
Robert Krusas
Hi All: The procedure in Rhode Island is for MS Patients and is venoplasty. They do a simple ultrasound to the neck of the patient. They have found that some MS patients have veins that collapse in the neck leaving the flow restricted out of the brain. This leaves high levels of toxins (like iron) behind. My wife went for the initial screening her veins were fine.
Debi Wilson
Thank-you for your comments and information Robert! Debi
Robert Krusas
I feel, I have heard it all:
1. Vitamin D, MS does not have as many cases as you get to the warmer climates and MS patients have low doses of Vitamin D. Could that be the sun we all stayed away from.
2. Dr. Wahls Protocol cured herself by using a Paleo Diet with supplements, (The body does not get enough iodine)and the diet is brutal.
3. Northwestern Dr. can remove MS Symptoms if its Relapse Remitting and you are newly diagnosed. The procedure is risky by shutting down your immune with heavy doses of chemo and restarting your immune system with stem cells.
4. I am a firm believer in the stem cell approach but there are many kinds of stem cells that just don't work and you need to know that are many forms of stem cells and which ones show the most promise.
Jan Lindsay
In 1973 I had my first major experience with MS at 23. I lost my vision in my left eye. After hospitalization and a 40 pound weigh gain, I got my vision back and started to research everything I could on MS. There were no real treatments at the time, but I read the MS Diet book. I might add that my brother is 7 years older than me also had his first experience of blindness at 23. His doctor gave him Betaserone and then Avonexe. His MS progressed until he was totally disabled over the last 41 years. I chose to change my life and follow the recommendations in the book. I added B-Complex and Cod liver oil to my diet for the MS, I didn't have another episode for 24 years. Again, steroids and no other treatment. In 1991 I had moved to Washington State. I wasn't paying attention to my diet as closely and in 1996 another episode scared me enough to try Copaxone. It helped get me and keep me on track. When I moved to Tennessee in 2006 I was back on track with my diet and the Neurologist were surprised that I was in such good shape for a person with MS for so many years. Don't get me wrong, I had my ups and downs over the years, but at 65 I am in better shape than most 30 year olds. The doctors told me that diet had nothing to do with it, but I kept on my regime with B complex and cod liver oil. Around 2015 research had found that vitamin D had a great effect on MS. Duh! They also found that estrogen had an effect. The steroids I received in the 90's had thrown my hormone balance off and my depression was horrible. I started birth control pills to get a balance.
Anyway the combination of both has really helped keep me stable. I have not had a real exasperation in 7 years. I am hoping for everyone's sake that a cure is found. My brother did not change his treatments, diet or life style. He has been bed ridden for over 6 years. Give up the stressful job and change your lifestyle. Moderate exercise, low fat and low sugar diet. Add B complex and cod liver oil, not the pills to your diet. Fish oil has been proven to be good for your brain, joints, eyes and skin. It lowers inflammation
in the body, good for the nerves and joints.
I have said more than you probably wanted to hear, but this has made an amazing differecne in my life while I wait for the cure.
Debi Wilson
Thank-you, Jan for Sharing your story and what is helping you! How much of B complex and cod liver oil do you take per day?
Justin
I was born with a demyelinating neuropathy of the peripheral nervous system. I've been in agony my entire life, but this gives me hope that maybe there will be help for me too. Thank you for the interesting article.
Debi Wilson
YW, Justin! Thank-you for your kind comments, all the best to you, Debi