This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Leo,

Sorry I didn’t reply earlier. I have been a little occupied.

It’s interesting you are on this drug.

Tamsolusin is preferentially selective for the alpha 1a adrenergic receptor which specifically related to relaxing muscles in the prostrate to improve urination.

There was a study released in 2015 an alpha2 adrenergic receptor agonist called Guanabenz (used to relieve hypertension in blood pressure) that seemed to dampen inflammation and enhanced myelin repair by preventing the loss of oligondendocytes and myelin. (see - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4360920/ )

So they argue it may be a possible therapeutic for MS. However, I found this note about Guanabenz - http://www.selleckchem.com/products/gua ... etate.html
Which suggests that this alpha2 adrenergic receptor agonist causes a significant loss nNOS by decreasing the levels of nitrite and nitrate.

Work by Ignarro and others would suggest that the nitrite/nitrate pathway is a viable route to Nitric Oxide formation when the eNOS/Arginine pathway is compromised. Wahls love of dark green leafy vegetables is all about the nitrite/nitrate pathway.

So maybe Tamsolusin for a man with MS is not the best way if you prefer eNOS over iNOS. However adrenergic receptor agonists may hold some promise.

In short, I don’t have an answer but it’s a great question.

Apart from Tamsolusin what else are you taking these days? I’m 58 now but I think (know) that I am improving again. I understand what you say about walking but I’m getting around it by aggressive massage, pilates and sticking with my usual protocol (covered elsewhere).

I did find an ACE inhibitor has had a very positive effect on my tight hips but massage, including the psoas, has also helped that.
Regards,

vesta wrote:Hello Leonard,

Leonard wrote:I am progressive. Slowly, my gait goes worse, my legs go more difficult, climbing the stairs becomes more of a challenge. If I walk for a short while, making the next step becomes ever more difficult. But then, I stand still for some time, seconds or minutes. And the next steps will go remarkably easier. This was no different several years ago when I could still walk for several miles. If “flat”, I would rest a bit and things would go better again. During my holidays, if flat after a long walk, I eat some berries and grapes that I found on the way and I would go much better – almost instantaneously. Lately, also temperature and air pressure are influences that have becomer more pronounded.

Why do we see this recovery? How is the dynamics explained? It seems difficult to explain with demyelination which is a fairly static process. Myelin does not change overnight, let alone in a few minutes. As I said in an above posting, I think the real problem lies with the ion pump and more in particular the fact that the equilibrium can not be maintained. Probably because there is insufficient energy supplied to recharge.

Insufficiently functioning mitochondria disrupt the normal activity including that of the electron transport chain. And recharging the ion pump then fails or goes too slow to maintain firings. And the pump will then soon lack the ‘potential’ for new firings (up to 100,000 firings for fully charged pump).

The direction of causality is not immediately clear to me.

Above quote posted Nov 21, 2015

What you have described implies obstruction of fluids in the spine. I believe progressive MS is caused by this obstruction and is a functional, not biochemical issue. upright doc's quote March 31, 2016 summarizes it well. Flanagan “Obstruction to blood and CSF flow in the spinal canal and cranial vault may play a causative or contributory role in neurodegenerative and neurological conditions of the brain and cord."Also, Terry Wahl's Healing success is due as much to stimulation of cerebrospinal and blood fluid in the spine as the diet. I avoided steroids with my first big attack by getting a shiatsu massage (which I've only recently come to recognize.) If function returns through body movement or position, it's the freeing of fluid circulation. A study of your spine using a FONAR cine upright MRI might give you a better idea of where the obstruction lies.

Best regards, Vesta

thank you Vesta.

with you, I am convinced that the cause for the progression lies primarily in the spinal column.
there are increasingly indications for this such as this article:
http://www.hcplive.com/conference-cover ... -sclerosis

would you have a link to the upright doc's quote from March 31, 2016?

regards, Leo

Scott1 wrote:Hi Leo,

Sorry I didn’t reply earlier. I have been a little occupied.

It’s interesting you are on this drug.

Tamsolusin is preferentially selective for the alpha 1a adrenergic receptor which specifically related to relaxing muscles in the prostrate to improve urination.

There was a study released in 2015 an alpha2 adrenergic receptor agonist called Guanabenz (used to relieve hypertension in blood pressure) that seemed to dampen inflammation and enhanced myelin repair by preventing the loss of oligondendocytes and myelin. (see - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4360920/ )

So they argue it may be a possible therapeutic for MS. However, I found this note about Guanabenz - http://www.selleckchem.com/products/gua ... etate.html
Which suggests that this alpha2 adrenergic receptor agonist causes a significant loss nNOS by decreasing the levels of nitrite and nitrate.

Work by Ignarro and others would suggest that the nitrite/nitrate pathway is a viable route to Nitric Oxide formation when the eNOS/Arginine pathway is compromised. Wahls love of dark green leafy vegetables is all about the nitrite/nitrate pathway.

So maybe Tamsolusin for a man with MS is not the best way if you prefer eNOS over iNOS. However adrenergic receptor agonists may hold some promise.

In short, I don’t have an answer but it’s a great question.

Apart from Tamsolusin what else are you taking these days? I’m 58 now but I think (know) that I am improving again. I understand what you say about walking but I’m getting around it by aggressive massage, pilates and sticking with my usual protocol (covered elsewhere).

I did find an ACE inhibitor has had a very positive effect on my tight hips but massage, including the psoas, has also helped that.
Regards,

thank you Scott. every time again I am impressed by you understanding of things. I am sure the NOS role will be clarified sooner or later.

besides the Tamsolusin, I take now Metformin 500 (works like Simvastatin to keep the oxLDL down and slows progression), some vitamin D and cod liver oil.

Thanks Leo,

When you were describing the issues about gait I thought about my latest medication which is working wonders for me. Dantrium (my last post - http://www.thisisms.com/forum/regimens- ... 9-270.html ).

The warning it came with was 1) it might make me tired but I think my Q10 protocol offsets that and 2) it makes you weaker but I think that is transitory and if you exercise and stretch you can overcome it. The weakness, however, can surprise you so exercise is essential.

I do take more stuff than you but I'm sure you know that.

Regards,

Hello Leonard,

Leonard wrote:I am progressive. Slowly, my gait goes worse, my legs go more difficult, climbing the stairs becomes more of a challenge. If I walk for a short while, making the next step becomes ever more difficult. But then, I stand still for some time, seconds or minutes. And the next steps will go remarkably easier. This was no different several years ago when I could still walk for several miles. If “flat”, I would rest a bit and things would go better again. During my holidays, if flat after a long walk, I eat some berries and grapes that I found on the way and I would go much better – almost instantaneously. Lately, also temperature and air pressure are influences that have becomer more pronounded.

Why do we see this recovery? How is the dynamics explained? It seems difficult to explain with demyelination which is a fairly static process. Myelin does not change overnight, let alone in a few minutes. As I said in an above posting, I think the real problem lies with the ion pump and more in particular the fact that the equilibrium can not be maintained. Probably because there is insufficient energy supplied to recharge.

Insufficiently functioning mitochondria disrupt the normal activity including that of the electron transport chain. And recharging the ion pump then fails or goes too slow to maintain firings. And the pump will then soon lack the ‘potential’ for new firings (up to 100,000 firings for fully charged pump).

The direction of causality is not immediately clear to me.

Above quote posted Nov 21, 2015

What you have described implies obstruction of fluids in the spine. I believe progressive MS is caused by this obstruction and is a functional, not biochemical issue. upright doc's quote March 31, 2016 summarizes it well. Flanagan “Obstruction to blood and CSF flow in the spinal canal and cranial vault may play a causative or contributory role in neurodegenerative and neurological conditions of the brain and cord."Also, Terry Wahl's Healing success is due as much to stimulation of cerebrospinal and blood fluid in the spine as the diet. I avoided steroids with my first big attack by getting a shiatsu massage (which I've only recently come to recognize.) If function returns through body movement or position, it's the freeing of fluid circulation. A study of your spine using a FONAR cine upright MRI might give you a better idea of where the obstruction lies.

Best regards, Vesta[/quote]

thank you Vesta.

with you, I am convinced that the cause for the progression lies primarily in the spinal column.
there are increasingly indications for this such as this article:
http://www.hcplive.com/conference-cover ... -sclerosis

would you have a link to the upright doc's quote from March 31, 2016?

regards, Leo[/quote]

Hello Leonard:

Find below the quote you mention. I apparently didn’t indicate the correct date. I recommend you follow upright doc’s thread (if you don’t already) for skeletal issues.

See CCSVI and CCVBP Thread, March 29, 2016, 2:54 pm. upright doc response to NZer1

Nigel,

I don't know where the normals came from. The 75% normal people, however, didn't exhibit the same anatomy. Nothing was mentioned about their anatomy. They could have been male and female with very different anatomy. What the cohorts exhibited was high incidence of the same pathology. Pathology isn't normal. The study showed that so called "normal" people have a high incidence of degenerative conditions in the cervical spine. In certain cases, spondylosis (degeneration) and stenosis (narrowing of the spinal canal) can obstruct and decrease blood and CSF flow. Obstruction to blood and CSF flow in the spinal canal and cranial vault may play a causative or contributory role in neurodegenerative and neurological conditions of the brain and cord.

You mention below the hackathon. How did you enter your paper, given that it appears to be organized through teams rather than individual participation?

In May, a hackathon will be held in Amsterdam, the Netherlands, to hack MS.
http://www.mshackathon.nl/

The hackathon is an novel innovative initiative of the VUmc, the main medical centre on MS in the Netherlands, and other partners.
The VU is declared free from church, state and commercial interest: http://www.vu.nl/en/about-vu-amsterdam/ ... index.aspx

In 36 hours, participants including doctors, researchers, engineers and consultants will be cleaned in a "washing machine" of all old and engrained ideas.

It looks like an ideal setting to discuss and test my progressive ideas.
I have contributed my thesis which has been much welcomed. see also general-discussion-f1/topic27300.html

Let's hope this will have an impact and help change the landscape!
Great initiative!

MY FINAL QUESTION/COMMENT.

At one point you mention your belief that your MS is caused by the EBV virus and that by eliminating the virus (through Valocyclovir for example), you can heal the MS. Do you still think so?
August 1 last summer I developed a Zona in the eye caused by another Herpes virus VZV Varicilla Zoster Virus (chicken pox). (I am now 67 and it is very common for those over 60 to develop Zonas (shingles in English). While I favor “natural” remedies in general, believe me I didn’t hesitate to take the Valocyclovir for 8 days. It stopped the Zona from developing, but I suffered terrible pain and afterwards fatigue – which is everyone’s experience. My Naturopath thinks I have recovered quite well, but I am having trouble overcoming the fatigue and building up my walking strength. Maybe what is called MS fatigue should properly be called Herpes fatigue. (With daily CNS fluid circulation therapies I’ve been able to stop MS attacks and no longer have “brain fog”, so now I guess my stress attack led to a Zona.) Anyway, I still can’t imagine taking Valocyclovir all the time. What is your take on that?
Thanks, Vesta

I have posted an addendum to the thesis MS Unravelled on http://www.thisisms.com/forum/post241115.html#p241115


Vesta, thanks for your comments, I will get back to you.

vesta wrote:Hello Leonard,

You mention below the hackathon. How did you enter your paper, given that it appears to be organized through teams rather than individual participation?

The thesis with addendum are now published on http://www.mshackathon.nl/wp-content/up ... ressed.pdf

The thesis is a bit of an unusual suspect as it opposes to the normal theses in MS research.
It is a quaestio infinita, a blueprint for a whole new understanding of MS.

As such, it is of a much higher abstraction where the rhetoric adds to the discourse.
It creates context - a new context - for data and measurements with the purpose to leverage understanding.

It follows the first rules of the "The Five Rules of Chaos" in the Chaos Imperative: How chance and disruption increase innovation effectiveness and success.
http://www.amazon.com/Chaos-Imperative- ... ri+brafman

The challenge is now to get change underway of this huge medical system.
Let's hope the MS hackathon will contribute a tiny bit towards that goal.

Leonard wrote:

vesta wrote:Hello Leonard,

You mention below the hackathon. How did you enter your paper, given that it appears to be organized through teams rather than individual participation?

The thesis with addendum are now published on http://www.mshackathon.nl/wp-content/up ... ressed.pdf

Dear Leonard,

You have written a very fine thesis, well thought out, documented and presented. I can understand why it has been well received. Thanks for directing me to it as well as to the upcoming Hackathon.

Best regards, Vesta

Is there a document like my own thesis that brings together many elements in a coherent picture to explain MS?

And if not, why don’t we find such a document in the vast amount of medical literature on MS?

Has the desire for perfection and the risk of professional failure cut the case into many very small pieces all carefully delineated? While the overview was lost?

If so, which I do not exclude, it indicates a systemic failure of massive proportions.

And the medical profession should knock their heads together rapidly in order to put together a total holistic view on MS.

The Amsterdam MS hackathon which was an ICT specific event only made a pretense to do something but risks to consolidate the old world and the old way of doing.

I'm sure that with the current knowledge and a little imagination the sector could quickly produce a very nice 'plan' which would refer MS once and for all to history.

The thesis under the link below titled Curing Multiple Sclerosis complements my own thesis. Apparently, hundreds of patients treated with hematopoietic stem cell transplantation (HSCT) are all healthy and are doing fine.
https://uu.diva-portal.org/smash/get/di ... TEXT01.pdf

I quote from the dissertation of Dr. J. Burman, neurologist in Uppsala Sweden at:
https://uu.diva-portal.org/smash/get/di ... TEXT01.pdf


In September 2003 a young woman fell ill. It began with a facial palsy, soon followed by weakness in a leg, pronounced fatigue and loss of vision. A diagnosis of multiple sclerosis was made. Although these symptoms got better, others more ominous took their place. She became paralyzed from the waist down and her bladder stopped working. She got treatment and again she got better for a while. However, this was just a short respite and by spring she was completely paralyzed.

She was transferred to the University Hospital. At the darkest hour, she was offered a novel treatment. Hematopoietic stem cell transplantation. With little to lose and everything to gain, she accepted. None could have guessed at the outcome.

A few days into procedure, she was able move her toes again, for the first time in two months. Rapid improvement followed. Some weeks after discharge, she could walk with a stroller. After three months she could walk unaided. After one year she was working part-time.

Ten years later, she is living a normal life. She works full-time. She is the mother of two healthy children. She has no treatment. She has not had any relapses.

Is she cured from multiple sclerosis?

Multiple sclerosis is a gruesome disease. On average it takes ten years of life. Even today, the most severely afflicted will die in their middle age. Not only will life be significantly shorter, the final years will be spent in agony. As a neurologist, I have seen too many wither away in the heart of life. I sincerely believe that MS can be cured, and that we have the means to do it. Every year, some one thousand Swedes are diagnosed with MS. Currently, less than 1 % of them will be treated with hematopoietic stem cell transplantation. Why are so few patients treated?

The difficulty of making an accurate prognosis is one serious obstacle. Even though we know that more than half of patients will end up with secondary progressive MS and severe disability, we cannot with any certainty identify who they are at diagnosis. Neither do we know what an adequate treatment response to conventional treatment is.

The perceived peril of the procedure is another impediment. We are today very far from the close to 10 % treatment related mortality that was reported in early years. In fact, we saw no mortality or life threatening adverse effects among the Swedish patients. We have come to a point when adverse events occur so rarely, that they are hard to measure accurately.

A third hindrance is that patients and neurologists adopt a wait-and-see approach to MS. It usually takes several years before MS start to manifest itself with permanent disability, and many patients and doctors do not take MS seriously until then. In fact, most of the requests for transplantation are self-referrals from patients with progressive disease and EDSS ≥ 6.

These hurdles are not insurmountable. Newly diagnosed patients should be continuously and carefully monitored to evaluate disease activity and tissue damage. Non-trivial disease should be hit hard and hit early. Patients and doctors need to be educated, in order to disperse prejudices against the treatment. Data from a phase III trial would be helpful to convince the skeptics and to establish the therapy as a second line treatment. We are currently participating in one (ClinicalTrials.gov Identifier: NCT00273364).

Meanwhile, every wheelchair is a failure and every premature death is a tragedy.

In Sweden, hundreds of MS patients have been treated with HSCT. 0% have deceased and the risk is therefore minimal. It is a one-time treatment.

From next year on, it will become a regular 2nd line treatment alongside with Tysabri or Gilenya Lemtrada in specific cases of aggressive RRMS. As soon as the Phase 3 study is completed, it will become the regular 2nd-line treatment for all active RRMS patients in order that they do not have to try Tysabri or Gilenya Lemtrada and fail.

Tysabri and Gilenya Lemtrada are definitely not harmless and, in particular, in the longer term can cause complications and these drugs are no solution. They just dampen the immune system.

HSCT resets the immune system and patients treated do not need to take any medication afterwards. Should MS activity resurface in the next 5 years, which still occurs in 10% of cases, the HSCT patient is post-treated with rituximab and this stifles the MS.

MS is under control and perhaps forever.

Why wouldn't HSCT become the mainline treatment? Then throw out all the crappy DMDs.

Has this treatment been tried on PPMS? There are no available treatments for PPMS so it could be the only treatment.

Some of us are close to the point where we would say either cure me or kill me. And if the odds are 50/50 either way we'll take it.

BTW Is there a link to the study?

According to the paper under the link below, the following countries have started with HSCT for MS: Germany, Italy, Romania, Denmark, Sweden, UK, Norway, the US, Canada, Israel, Russia, Brazil, South Africa, Singapore, India, Australia, and the Philippines.

The international Phase 3 study into HSCT takes place in the US (Dr. Burt Feinstein Medical School Chicago), the UK, Sweden (Dr. Burman Uppsala) and Brazil.

Furthermore, I understand that PPMS patients travel to Mexico for HSCT but I do not have any further details.

And then there is this American woman who was treated in the mid 90s and exchanged her cane for a golf club. Apparently she does presentations in the country. I remember having seen a funny youtube video but can't find it back now.

In HSCT, the immune system is reset. The stem cells are distilled from your own blood. These stem cells are 'virgin' and have not been infected with the virus. After the reset with chemo, new T cells and B cells grow that are clean.

http://opdebeen.nl/time-for-disruptive- ... ealthcare/

Unfortunately the paper is in Dutch with some pieces in English.
Possibly Google translate could help.
I think the paper is well done and is definitely worth a read.

I think here is real hope:
http://www.telegraph.co.uk/science/2016 ... after-gro/

This workshop on Metabolism in MS and the Role of Mitochondrial Dysfunction comes close to my thesis.
http://multiplesclerosisnewstoday.com/2 ... iota-role/

Together with other developents such as HSCT, I sense the tide is changing...
It is most important that the approach goes beyond the traditional lines of thinking.