I need a REAL MS Specialist

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vesta
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I need a REAL MS Specialist

Post by vesta » Sun Aug 25, 2019 12:44 am

MS patients are doubly cursed. 1) by the « disease » and 2) by the misguided treatment which poisons them with mutlple MRIs and immune suppressive drugs.

As I’ve said, I believe Multiple Sclerosis should become a distinct specialty. One might begin with this one scientific study.

*Cerebral Circulation Time is Prolonged and Not Correlated with EDSS in Multiple Sclerosis Patients: A Study Using DigitalSubtracted Angiography
http://www.plosone.org/article/fetchObj ... tation=PDF
« Discussion : The present study reported a significant CCT (Cerebral Circulation Time) increase in MS patients compared to control sub- jects, indicating a consistent condition of cerebral hypoperfusion. »

Let's start there : Where, why is the blood flow obstructed ? And fluid flows impacting the central nervous system ? Once determined, I believe one can begin to be of real help to the MS patient.

What should my MS specialist consider ?

In my own case stress clearly triggers « attacks », setbacks. My first dramatic healing 1984-85 came through the talented work of a Kinesiologist who used detoxification, diet modification, supplements, and « energy » work derived from traditional Chinese medicine theory/practice. I now realize liberated energy flow facilitated blood/cerebro-spinal flow (CSF) and I underwent energy treatment at least once a month. The attack of March 1987 was triggered by my decision to leave my husband. STRESS. I observed that my mind wanted one thing, my body decided another. But little damage was done, spring 1988 I could walk miles without faltering. Summer 1989 more stress brought an attack from which I didn’t fully recover, though I didn’t realize it until the following year while trying to walk 4 miles around a lake. Even so, when I moved to France spring 1992 I was apparently quite recovered, no apparent deficits.

Then I walked into a French family horror show and suffered years of stress exacerbated by frequent viral infections. Cheating the MS diet didn’t really do me in, it was the stress which must have clamped the descending veins shut, backjetting blood Into the brain/spine. All setbacks subsequent to the first healing were triggered by STRESS (emotional, viral, diet) And recent Falls which injured my spine.

So, what should my MS specialist do ?

Remind me to follow faithfully my own SEVEN STEPS TO MULTIPLE SCLEROSIS HEALTH.

Then, prescribe an approriate MRI scan to study blood/CSF flows. FONAR ? SCHELLING HAACKE PROTOCOL ? (See my blog of June 23, 2019 « MRI SCANS – STANDARD, HAACKE PROTOCOL, FONAR.) Check out extrinsic obstructions ? CAT scans ? X-rays ? Sonograms ? AO Chiropractor ? (I believe that the standard MRI is rather pointless since it focuses on lesions whose origin is unknown. According to my California Neurologist an apparently untouched MSer may exhibit many lesions while a severely handicapped MSer may have few lesions. So of what use is such an examination ?)

For myself, I would love to undergo a FONAR MRI in order to get an overview of both blood and CSF circulation.

Is my primary problem that stress tightens up the musculature, impacting the veins in the same way, so that nervous system dysfunction follows ? Are my veins clogged up because of life long viruses, colds, flus, mononucleosis (Epstein Barr Virus) ?

A Parisian Angiologue found no stenosis or anomaly when she performed a Sonogram on my Jugular veins and Vertebral Veins. I would have to be sedated to undergo a Sonogram on the Azygos vein, which implies I should simply undergo venoplasty to both see and « unplug » the azygos along with other veins if so indicated. This treatment is not available in France. (I believe a severe spasm of the azygos vein triggered my first major attack. (See Pallis/Shiatsu blog May 5, 2013).

Something interesting happened to me a few years back when I walked out of the Paris Opera House at the Bastille after a ballet performance. I apparently felt so much « at home » and happy that I could walk without limping. I tried to alert my husband, (we were walking arm in arm) but it was a cold winter night, we were surrounded by traffic, he couldn’t hear me and wasn’t paying attention. I wanted him to stop and notice, I suspected this new found freedom wouldn’t last long. And it didn’t. We dined in a local bistro and when I rose to leave the old handicapping rigidity had returned.

Did this recovery really happen ? And why ? I read recently on Dr Zamboni’s Vascular Connection Facebook page of a woman who woke after Venoplasty to find she no longer suffered from « drop-foot ».Renewed blood flow apparently released the neurological deficit. Did my momentary joy release the blood flow to free the neurological deficit ? This implies that my problem is not so much a question of plugged up veins but a body tension which constricts the veins – suggestive of Dr Owiesy’s theory about the role of the smooth muscle layer of the veins.

Would Dr. Owiesy’s solution, the application to the Jugulars of dexamethasone/lidocaine/thiamine, help open the blood flow from the brain as did my momentary Opera House joy ? Should my MS specialist consider this ?

So consider the factors. Is blood flow from the brain impeded by a venous obstruction? Or does a dysregulated autonomic nervous system cause the smooth muscles of the vein to go into spasm, thus sending refluxed blood into the CNS? Will simple body tension cause the veins to seize up and impede blood flow, tension caused by emotional stress, the flu, toxins, poor food? Has stress re-activated a dormant EBV Herpes virus lodged in the autonomic nervous system causing the veins to seize up in spasm? Is there a bone pressing on the otherwise healthy vein? Does cerebro-spinal fluid flow obstruction damage the axons, the spinal cord? Where is the principle obstruction to the free flow of CNS central nervous system fluids? How should it be treated?

One final factor my MS specialist might consider ? Simon Ewart-Grist, a British electrical engineer by training and profession, has proposed an original idea -brilliant might even be the word– suggesting that the iron nanoparticles of magnetite in the blood damage the myelin of MS patients. (I have posted his theory on the posts of September 29, 2018 and October 22, 2018). He has invented a device – the desatascador - which acts as a magnet to draw the nanoparticles out of the body, recommending the use of cranberry juice to prevent bacteria clogging up the veins. At least one participant on TIMS (ThisisMS.com) found use of the desatascador improved his eyesight dramatically, and his testimony suggested to me that the magnetite had punched holes in the vein walls to damage the optic nerve. Anyway, we are still addressing blood flow here. I fear using the « desatascador » because I believe by fooling around with it I carelessly scattered magnetite into the CNS to cause serious neurological damage. For me, this sorry experience demonstrated how magnetite might be harmful. I would be delighted to find a therapist who can remove the magnetite from my blood after having studied my case. But since Simon just proposed the idea, we are light years away from trained therapy.

So here is suggested multiple causes of fluid obstructions in the CNS. And after analyzing my « case », a solution might be suggested. Chiropractic manipulation ? Osteopathic manipulation ? Venoplasty ? Dr Owiesy’s injection of dexamethasone/lidocaine/thiamine? TENS Acupressure ? Acupuncture ? Shiatsu massage ? Surgery to overcome structural obstructions. « Desatascador to draw out the Magnetite ? Other ?

Let’s say no solution can be found to release the blood/CSF flows. I believe Neurologists are basically treating the damage caused by pathological CNS fluid circulation. This means medication. This is certainly not my domain. Let’s take the TIMS correspondant Donnchadh as an example. He developed « MS » subsequent to an accident which damaged his spine causing bones to obstruct the Jugular Veins. He persuaded a neuro-surgeon to free the Jugulars by shaving down the bones. He hoped that Venoplasty would open blood circulation. No luck. After years of obstruction tissue had built up in the venous « stenosis » which couldn’t be removed. His life was ruined because of blockages in short sections of the jugular veins. He stopped writing with this news so I don’t know what his Neurologist prescribed.

Warning. Those who are positive for the JC virus should avoid drugs which can trigger a deadly condition known as PML. ElliotB writes this on ThisisMS August 17, 2019.« But frankly, it does not make sense to take a drug that can possibly trigger it when there are many other DMDs that do not.
My neurologist wants me to change medications and I told him I will not consider any medication that might lead to PML. I just had a MRI done and am seeing him tomorrow for his recommendations. »

STEM CELLS ? I haven’t studied the issue. However, I believe before one seeks to repair damaged myelin and the brain’s grey matter, one needs to stop the ongoing damage – the blood back jets for example. Otherwise, repair will be overwhelmed by ongoing assaults.

In short, I need an MS Specialist. Why are Neurologists unequipped to help me ?

Answer : Because I believe they don’t know what MS is nor how to treat it.

Previously published on my blog MSCureenigmas.net https://www.mscureenigmas.net

ElliotB
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Re: I need a REAL MS Specialist

Post by ElliotB » Mon Aug 26, 2019 2:07 pm

"Why are Neurologists unequipped to help me ?"

What type of doctor could actually 'help' and what could he/she actually help with? My father had MS about 50 years ago and there was little known then about MS and MS treatment and frankly I don't know if there is much more known about treatment that could really help now.

The bottom line is that very little is known about MS with regards to helpful treatments. Sure there are many, many theories but they are just that, theories.

vesta
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Re: I need a REAL MS Specialist

Post by vesta » Tue Aug 27, 2019 1:09 am

ElliotB wrote:
Mon Aug 26, 2019 2:07 pm
"Why are Neurologists unequipped to help me ?"

What type of doctor could actually 'help' and what could he/she actually help with? My father had MS about 50 years ago and there was little known then about MS and MS treatment and frankly I don't know if there is much more known about treatment that could really help now.

The bottom line is that very little is known about MS with regards to helpful treatments. Sure there are many, many theories but they are just that, theories.
Greetings: You haven't read what I wrote. For starters Neurologists should get out of the way and find appropriate therapists.

So, what should my MS specialist do ?

Remind me to follow faithfully my own SEVEN STEPS TO MULTIPLE SCLEROSIS HEALTH.

Then, prescribe an approriate MRI scan to study blood/CSF flows. FONAR ? SCHELLING HAACKE PROTOCOL ? (See my blog of June 23, 2019 « MRI SCANS – STANDARD, HAACKE PROTOCOL, FONAR.) Check out extrinsic obstructions ? CAT scans ? X-rays ? Sonograms ? AO Chiropractor ? (I believe that the standard MRI is rather pointless since it focuses on lesions whose origin is unknown. According to my California Neurologist an apparently untouched MSer may exhibit many lesions while a severely handicapped MSer may have few lesions. So of what use is such an examination ?)

For myself, I would love to undergo a FONAR MRI in order to get an overview of both blood and CSF circulation.

So let's start with an MRI which reveals how CNS fluids circulate and go from there. I am looking for a "specialist", not necessarily an Allopath. What harm could this knowledge do? How could one ignore obstructions in CNS fluids? Shouldn't some effort be made to overcome the obstructions? Why waste time and money on a standard MRI? Or do both.

As Schelling pointed out, current practice is based on DOGMA, not Science. See my July 21, 2019 post "Status, not Science, rules MS treatment".

To say that nothing has changed since your father's treatment options simply reveals how the iron grip of the MS mafia has prevented the development of options outside their power and control. Actually, much has changed.

Best regards, Vesta

ElliotB
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Re: I need a REAL MS Specialist

Post by ElliotB » Tue Aug 27, 2019 11:04 am

"Actually, much has changed"

I would like to know what in your opinion has changed and what is now known WITH CERTAINTY compared to what was know with certainty many years ago.


There are certainly a lot of new theories but theories are just that, theories. I have not seen any of these theories, most of which certainly sound good, proven in any way.


So what do we know now that we was not known 50 years ago?

vesta
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Re: I need a REAL MS Specialist

Post by vesta » Sun Sep 01, 2019 12:21 am

ElliotB wrote:
Tue Aug 27, 2019 11:04 am
"Actually, much has changed"

I would like to know what in your opinion has changed and what is now known WITH CERTAINTY compared to what was know with certainty many years ago.


There are certainly a lot of new theories but theories are just that, theories. I have not seen any of these theories, most of which certainly sound good, proven in any way.


So what do we know now that we was not known 50 years ago?
Greetings :

I can’t believe you wrote that. I was diagnosed nearly 40 years ago before the MRI, DMVs and above all THE INTERNET which has made alternatives available. As pwMS take charge of their health care, they are doing MUCH better. See Joan Beal’s latest post on the Vascular Connection. Dr Zamboni’s publication of his CCSVI theory Dec 2008 opened the door to enormous research on blood/fluid circulation in MS and creation of ISNVD, more research. (Also my site MSCureEnigmas.) Since obstruction of fluid circulation can have many origins, no single CURE is possible, especially for the test tube fanatics who hope for a magic pill.

Recently Christina Willman contacted me to thank me for writing my site MSCureEnimas. I plan to highlight her work in my next post. An example of her own work

« I have been prescribing Flomax for my dad for over a year so he can urinate better. It works on the prostate but also relaxes smooth muscle to improve urine flow.

One day I got to thinking, hmmm maybe I should try Flomax myself.....

Well, I went to see my primary care doctor (who is awesome and knows I'm off the reservation and he'll try things I suggest as I've researched most things to death) and asked him about it (really just a vasodilator in general). 

He wasn't so sure about trying flomax but said he would be up for trying a different vasodilator. 

Amlodipine is a calcium channel blocker used for angina (chest pain caused by constriction of the heart vessels). It relaxes smooth muscle by blocking calcium channels. 

Boom. Winner. It helps the heaviness in my legs and back as well as my overall fatigue! He prescribed me 2.5mg to take daily. A couple times I've taken 2 pills (so 5mg) and it's AWESOME! I'm going to ask him if I can start 5mg/day since the adult dose is 5-10mg daily. The negative effects are dizziness and hypotension (drop in blood pressure) »


Another thing she pointed out –

 »« But seriously, why do women get "better" during their 2nd trimester of pregnancy?  THEIR BLOOD VOLUME DOUBLES?!?! Duh. It's a scientific fact ».

None of this info was availble to your father 50 years ago (or me 40 years ago.) Christina provides an excellent example of someone with MS who does her research and seeks professionals to help her.

Best regards,

Vesta

ElliotB
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Re: I need a REAL MS Specialist

Post by ElliotB » Mon Sep 02, 2019 5:46 am

Vesta, thanks for your comments. You make my point exactly. Your comments are well thought out 'theories', good ones and you may be right, BUT there are alternative points of view on all of them that offer equally compelling theories. These are just 'theories' as well of course.

My point is simply, and your comments did not change my opinion, that we as patients and experts alike still unfortunately know very little definitively about MS or its treatment. The only thing I know with certainty and about MS, as I stated before, is that very little more is known about MS now than was known 50 years ago which is very, very little. Unfortunately. I certainly can't come up with anything.

Be well! Always enjoy reading your comments here and on your site.

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