Multiple Sclerosis is a Spectrum Disorder

Dr. Gayatri Devi is a neurologist at Lenox Hill Hospital in NYC.  She has recently published a book called "The Spectrum of Hope: An Optomistic and New Approach to Alzheimer's Disease and other Dementias."

Dr. Devi is redefining Alzheimer's as a spectrum disorder, meaning that this diagnosis is not the same for every patient, that each patient will have a unique experience, and that there is much which can be done to empower the individual patient to reclaim their health.  A diagnosis of Alzheimer's is not "one size fits all."  And she attacks the biggest myth---that all people with an Alzheimer's diagnosis will end up incompetent in a nursing home.  She says this simply isn't true.

In this new book, Dr. Devi outlines ways to treat and arrest Alzheimer's progression through nutrition, exercise, lifestyle and medication.   She asserts that 60% of all Alzheimer's cases are preventable, and that science has shown that less than 5% of Alzheimer's cases are genetic.   link

I like Dr. Devi.  A lot.  She is positive, informed and uses real data and science to back up her claims. She has worked with Alzheimer's patients for 23 years, and she wants to dispel the myths about the disease.

Dr. Stuart Zola of Emory University has been making the same case.  He has been advocating for a spectrum disorder classification for Alzheimer's Disease and has specific recommendations for treatment.
link

His most important lifestyle interventions are the exact same as Dr. Devi's.
1. Heart Healthy Diet
2. Stress Reduction
3. Exercise
4. Sleep
5. Cognitive training--use it, or lose it.

Does this list look familiar to anyone else?  

I would submit that the exact same case could be made for Multiple Sclerosis.
MS is a neurodegenerative disease which is not genetic.  MS is a vastly different disease in individuals.  MS also occurs more commonly in women.   MS progression can be halted.  MS is a spectrum disorder.

Then why aren't MS neurologists using this same language in discussing treatment and lifestyle intervention with their patients?

The difference is that MS has a $20 billion dollar a year drug industry attached to the diagnosis.  And it is important for MS specialists to maintain the narrative that MS is a destructive, incurable autoimmune disease which must be attacked at the very beginning with immune modulating drugs.  No matter the disease presentation, the age of the patient, the level of neurologic damage---the narrative has been that ONLY drug intervention can arrest the MS disease process.  And this narrative has been pushed and publicized by MS Societies, MS advocacy groups, MS blogs, MS groups (which are sponsored by pharma) and in the press.  There's a lot of money wrapped up in telling this story.

Watch this Canadian news story from 1989, almost 30 years ago.   It will take you 18 minutes, but I believe it is important. The first half is about chemo treatment for MS, the second half is about nutrition.

Link to 5th Estate MS Story

Notice how the neurologists speak to the MS patient about his wheelchair prognosis "in two years" if he does nothing to treat his MS aggressively.   Jeff had a very similar prognosis. He was having trouble walking, was spending the day on the couch, exhausted.  Just like Ron, he was told to "do everything he could" to fight his MS.  But that "everything" only included drug therapy.  Listen to how Ron accepts the risks of cyclophosphamide (Cytoxan), a cancer treatment with very serious side effects,  which would eventually be shown to be ineffective as a monotherapy for MS. link

At 10 minutes in we meet another person with MS.  She has been part of Dr. Roy Swank's 35 year observational study of a low fat diet.  Dr. Swank's patients are still walking, working, living, remaining stable.  Dr. Swank gave his patients hope of disease reversal, of remaining mobile.   His program is simple.  Avoid fats from meat and dairy, eat mostly plants.  What we would call a "heart healthy diet."

The MS neurologist speaks for the medical profession, saying diet has "little to no role" in the care of MS patients.  And this is the position of the MS Society today---even though the science shows that the diet has made a difference.   Again, this was 30 years ago.  And it is still true---as the MS Society threatens to sue Matt Embry for speaking out about true MS Hope, and a program based on the Swank Diet.   link

We need to reframe the dialogue.  MS is a spectrum disorder.  It can be treated with lifestyle, nutrition, and exercise.   A healthy heart and vasculature can protect the brain.   Yes, MS will be different for every individual, medications may help some--and not all will recover.  But that does not negate the very real improvements made for many.

Push back against the pharma narrative.
Write your own story,

Joan

HSCT-- Facts behind the Headlines

Whenever there is a news story on autologous hematopoietic stem cell transplants (HSCT), I hear about it.  Perhaps this also happens to you, MS patients and caregivers?  Well-meaning friends, family, and acquaintances forward you links to glowing miracle cure stories.  And I reply with sincere thanks--and also inform them that Jeff's doing really well, with no MS disability, inflammation, new lesions or disease progression, now 9 years past his diagnosis with MS.  So, HSCT is really not for him.  Believe me--I know how fortunate we are to be able to report that!

Here's the latest miracle cure HSCT story out of Sheffield Teaching Hospital in the UK, which was picked up on British television and the press.  It's received a lot of coverage after the BBC aired a report:
http://www.bbc.com/news/health-35065905


For those who have had MS awhile now, these repeated stories on HSCT are heartening, but at the same time discouraging.  Because HSCT is certainly not for everyone, and many can't even consider this treatment.  It is good to know that some people are getting relief from MS and recovering their abilities.  It's also very important to understand that these stories are anecdotal.  They are heart warming, for sure, I'm not trying to be a downer.  But there is a dark side to this "cure narrative" I'd like to explore:  the premise that a "faulty immune system" in MS which needs to be ablated and completely removed is keeping us from understanding true disease progression.  

The general public, press, and politicians get a false sense of progress when they read these news stories.  They think, "well, at least we've got multiple sclerosis cured"....when nothing could be farther from the truth.  And new and recently diagnosed MS patients, who have yet to have gone through a decade of these kinds of stories, may mistakenly believe this is a cure.

HSCT was developed for pediatric cancer, and has been a blessing for the children and their families who have seem mortality rates decrease and life expectancy increase.  In this instance, carpet bombing the body and killing off cancer cells and then rebuilding the immune system with harvested and purified stem cells has saved lives. http://emedicine.medscape.com/article/989518-overview

In MS, HSCT use was first promoted by Dr. Richard Burt in the 1990s and has been used to treat thousands with MS.  However, there have been no randomized, double-blind placebo controlled trials, so even after all this time, results are still not considered "gold standard."  In fact, some of the results may be placebo.  The stronger or more invasive the proposed treatment, the more powerful the placebo effect.   https://www.psychologytoday.com/blog/sideways-view/201502/the-placebo-effect

Here are the facts:

1.  HSCT is only appropriate for those with highly inflammatory relapsing remitting MS, who have not responded to other drug therapies, and who have new lesions and relapses within the past year.  Trial participants cannot have had MS for longer than 10 years and cannot be too disabled.  This is a very small and specific group of people with MS.
A systematic literature search identified a higher efficacy of aHSCT in younger, less disabled MS patients with inflammatory activity, similar to the findings from Hamburg.
http://www.ncbi.nlm.nih.gov/pubmed/25956824

2.  HSCT uses chemotherapy to wipe out the existing immune system.  Many researchers urge caution regarding this approach, because chemotherapy--on its own-- is known to have many deadly side effects, causing up to 5% mortality in some trials.  Chemotherapy also causes demyelination and brain atrophy.  I've written extensively on the long term neurological effects of chemotherapy here:  http://ccsviinms.blogspot.com/2014/03/chemotherapy-causes-brain-atrophy.html

3.  Long-term success rates show that MS disability is not halted.  HSCT is not a cure.  It may be a very helpful treatment for some with highly inflammatory MS, however the disease continues to progress in most patients.  And autoreactive T cells to myelin targets return.

Our data parallel results from some of the clinical phase I/II studies showing continued clinical disease progression in multiple sclerosis patients with high expanded disability system scores despite autologous stem cell transplantation.http://www.ncbi.nlm.nih.gov/pubmed/17293360

Demyelinating and inflammatory activities of MS persisted after allo-HSCT in all of the patients with MS. Active and chronic active MS lesions exhibited significantly higher numbers of CD3+ T cells and CD8+ cytotoxic T cells and significantly higher scores of CD68+ microglia/macrophages than did chronic inactive lesions or normal-appearing white matter.http://www.ncbi.nlm.nih.gov/pubmed/20558390

Re-emergence as well as in vivo expansion of autoreactive T cells to multiple myelin targets was evident in all patients studied. The reconstituted myelin-specific T cells exhibited the same Th1 and Th2 responses as preablation myelin-reactive T cells. In contrast, the post-therapy T-cell repertoire exhibited a significantly diminished capacity for Th17 responses.http://www.ncbi.nlm.nih.gov/pubmed/23463494

And now, the big question.  Why do autoreactive T cells return even after they've been blasted to kingdom come and replaced with a new immune system?  Why does MS continue to progress?

Could it be that the underlying cause of the activation of these t cells is not a faulty immune system---but rather a continuing process of neurodegeneration?

The kind of neurodegenerative process we see happening in the gray matter structures of the MS brain?  The type of neurodegeneration that shows continued atrophy of the thalamus in all people with MS---from CIS to PPMS?  http://ccsviinms.blogspot.com/2016/01/thalamic-atrophy-and-ms-progression.html

A major pathological complication of auto-HSCT may be the effects reported on brain volume.  Rapid loss of brain volume has been measured a few months after treatment [50]. Auto-HSCT has seemingly detrimental effects on the integrity of the brain tissue that leads to rapid loss of about 1.92 % of brain volume.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4715306/

There is a huge difference between finding MS treatments which give patients relief from their symptoms and reduction in disability for a year or two-----and understanding the underlying disease mechanism which allows for continued MS progression.  Temporarily tamping down inflammation is not the same as halting MS disease progression.  

Keep getting the correct info out there.  Push for researchers and policy makers to examine the underlying cause of MS disease progression.  

That's the only way forward,

Joan

This is about the use of bone marrow stem cells to to replace the immune system and is the most extreme form of "induction therapy" aimed at rebooting the immune system. This study has been reported by us and it is clear that the majority of people are not leaping out of their wheel chairs. This is just the type of poor reporting that the media specialise in ...media hype

http://multiple-sclerosis-research.blogspot.com/2015/03/miracle-stem-cells.html

PICTURE CREDIT:  TOM SCOTT---Journalism Warning Labels

Chemotherapy causes brain atrophy, demyelination and MS disease progression

While many MS specialists continue to explore chemotherapies and immunoablation for people with MS, the side effects of these drugs on the brain are rarely mentioned.

As we learn more about the long term effects of chemotherapy of the central nervous system, it is vitally important that people with MS are given the facts.

If you are being recommended to try any of these therapies, please discuss the side effects with your doctor.

Recent studies have now started to unravel the cell‑biological basis for commonly seen neurotoxic syndromes in chemotherapy associated central nervous system damage and have provided compelling explanations for delayed neurological complications, such as cognitive decline, progressive myelin disruption and brain atrophy.
http://www.ncbi.nlm.nih.gov/pubmed/20738009

1. Chemotherapy kills myelin and OPC cells--  Chemotherapies are known to affect healthy brain cells, causing them to die off long after treatment ends.   Studies have shown that months after exposure to common chemotherapies, oligodendrocytes and precursor cells continue to die, and the brain is unable to remyelinate.

This study is the first model of a delayed degeneration syndrome that involves a global disruption of the myelin-forming cells that are essential for normal neuronal function,” said Mark Noble, Ph.D., director of the University of Rochester Stem Cell and Regenerative Medicine Institute and senior author of the study. “Because of our growing knowledge of stem cells and their biology, we can now begin to understand and define the molecular mechanisms behind the cognitive difficulties that linger and worsen in a significant number of cancer patients.”
http://www.urmc.rochester.edu/news/story/index.cfm?id=1963

2. Chemotherapy changes the brain's metabolism--  Doctors have long-described "chemo brain"--a common and debilitating side effect of chemotherapy, causing cognitive fog and a loss of coping skills.  In fact, the brain's metabolism is altered.

Chemo brain phenomenon is more than a feeling. It is not depression. It is a change in brain function observable on PET/CT brain imaging."
With the help of special software, they were able to pinpoint differences in brain metabolism before and after chemo. They then correlated these with patient history and data from neurologic exams and chemo treatments.  The analysis reveals a statistically significant link between reductions in regional brain metabolism and symptoms of chemo brain.  Lagos says their findings show "there are specific areas of the brain that use less energy following chemotherapy".

"These brain areas are the ones known to be responsible for planning and prioritizing," she adds.
http://www.medicalnewstoday.com/articles/253277.php

3. Chemotherapy used in bone marrow transplant doubles brain atrophy in those with progressive MS.    Because of this, one neurologist is now cautioning his progressive MS patients.  The chemotherapy used in bone marrow transplant is likely to accelerate the disease progression in those with progressive MS.

The following study I was involved shows that when SPMSers are given chemotherapy they undergo increased neuronal loss, which is associated with faster progression on the EDSS and greater brain atrophy. The data speaks for itself. The picture below is what we call a survival curve of EDSS progressions and you can see that the MSers who had high serum levels of the neuronal toxicity marker neurofilament were much more likely to progress than those who did not have raised neurofilament levels. Similarly, brain atrophy rates in SPMSers were in the order of 2.1% per year in those who had a BMT compared to only 1.2% per year in SPMSers who did not have a BMT; the upper limit of normal for brain atrophy in healthy adults is generally accepted to be 0.4% per year. The bottom line is that if you have SPMS BMT is likely to accelerate your disease progression.
http://multiple-sclerosis-research.blogspot.com/2014/02/more-on-bmt-neurotoxicity-and-brain.html

4. Current information on Lemtrada (Campath/Alemtuzumab)
New claims are that treatment reduced cerebral atrophy in RRMS patients who were followed for two years---but earlier studies showed that this was not true in secondary progressive MS.  Treated patients were followed for 14 years past infusions---and cerebral atrophy and disease progression continued.  The FDA was right to deny Lemtrada in the US---sadly, the MS patients that are asking for this treatment to be approved have been given an incomplete scenario.

Unfortunately, this did not lead to a clinical improvement in the disability in these patients. In fact, their disability worsened with time at a rate of 0.02 EDSS points for each patient each year. Evidence for continued neurodegeneration in these patients was shown by progressive cerebral atrophy on follow-up MRI scanning. This particular group of patients who showed continuing disease progression had the highest inflammatory load prior to commencing alemtuzumab therapy. This group of patients were followed up with MRI scanning many years later (14 years post treatment) and did not demonstrate any increase in lesion load but did demonstrate further cerebral atrophy [Coles et al. 2006]. This was reflected in their EDSS score, the median being 7.5 (range 4.5–9) at latest follow up [Hill-Cawthorne et al. 2012].
http://europepmc.org/articles/PMC3629751

Campath 1H treatment was associated with a sustained and marked reduction in the volume of Gd enhancement, indicating suppression of active inflammation. Nevertheless, many patients developed increasing brain and spinal cord atrophy, T1 hypointensity, and disability. 
http://www.ncbi.nlm.nih.gov/pubmed/10489036



In fact, neurologists have known about chemotherapy causing brain atrophy for many years.  Here is a study from 2006--where neurologists followed brain atrophy after chemotherapy in preparation for a bone marrow transplant.  And they included a man without MS, being treated for cancer, to see how his brain did.  His brain atrophy doubled....just like the people with MS.

The man with non-Hodgkin lymphoma provided a clue. Because he didn't have MS, he should not have had any cerebral inflammation or edema. Yet, in the three months after he received the same treatment as the MS patients, his brain shrank at the rate of about 6 percent per year, a rate of atrophy similar to the MS patients.
http://journals.lww.com/neurotodayonline/Fulltext/2006/07040/Brain_Atrophy_in_Ms_May_Result_From_Immunoablation.11.aspx

We still do not fully understand the disease mechanism of MS.  While MS specialists continue to operate under the assumption that a faulty immune system must be annihilated ----we are learning that the true progression of MS can be linked to neuronal loss, or brain atrophy.  There is a terrible and tragic irony in the fact that chemotherapies, which are known to double brain atrophy rates, are being recommended to people with MS.

Please, share this information in the MS community.  For those who have already been treated with chemotherapies, there is hope of healing through diets high in antioxidants and phytonutrients and omega 3 oil supplementation. In fact, simple lifestyle factors like diet, exercise, UV rays and vitamin D are increasing blood flow to the brain are helping reverse brain atrophy in all of those with MS.

Know the facts, and be well,
Joan