Should I start MS medication? What would you do in my shoes?

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Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Tue Dec 24, 2013 9:32 am

NHE wrote:Zjac,
In case you missed it, I've linked to a post about my experience choosing a DMD.

avonex-f5/topic16456.html#p163704


Missed the link earlier. Just read through it. I didn't base my research on the drugs on their scientific activity, very few convinced me in that sense. I have indicated copaxone here because it is what is most compatible with LDN which I am taking. Additionally I'm not keen on being left "knocked out" for 24 hrs on the weekend. I have a 7 month old daughter and in that sense want to make the most of my weekends.

I started the lifestyle changes ASAP and I too hope they are the key to slowing down or maybe even halting progression. I believe I may have had some slight neurological signs at most 12 months before my first event but I'm talking about some slight short lived tingling on my pinkie finger and some back-of-the-eye pain but nothing too exaggerated. So hopefully I've "cAught it quickly". I also think that despite the very limited funding for initiatives based on lifestyles changes..they show very interesting results. I will stick with high doses of vit d, omega 3, ALA etc because I honestly believe that for the large majority they do more good than harm.

I have yet to look into CCSVI further, but again I think for several it has helped.

The hardest thing in my opinion is the fact that many do go several years (5...10...15...more?) without any further relapses or progression, so it's very hard to conclude its down to the crab drugs. But as with other things I've mentioned, if you do tolerate the drugs we'll...maybe for lots of people they do provide more good than harm.
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Re: Should I start MS medication? What would you do in my sh

Postby Cece » Wed Dec 25, 2013 2:14 pm

zjac020 wrote:My masseur always comments that he finds my cervical neck area tense.

A possible CCSVI-explanation for this is that, if jugular veins have obstructions, there is more collateral blood flow going through all the other veins of the neck, which includes the veins that drain the muscles of the neck, and those areas become congested because of slow drainage and the muscles feel tight because of the congestion.

I have tense neck muscles too.

You might look at the research that seems to show that going on a DMD can slow or prevent the conversion of CIS to MS. I don't know what I would or wouldn't do in your situation, except look into CCSVI testing.
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Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Wed Dec 25, 2013 3:42 pm

Cece wrote:
zjac020 wrote:My masseur always comments that he finds my cervical neck area tense.

A possible CCSVI-explanation for this is that, if jugular veins have obstructions, there is more collateral blood flow going through all the other veins of the neck, which includes the veins that drain the muscles of the neck, and those areas become congested because of slow drainage and the muscles feel tight because of the congestion.

I have tense neck muscles too.

You might look at the research that seems to show that going on a DMD can slow or prevent the conversion of CIS to MS. I don't know what I would or wouldn't do in your situation, except look into CCSVI testing.


Can I ask if you have any link to that research?

I will look further into CCSVI testing. There is limited info on this procedure in Spain though.
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Re: Should I start MS medication? What would you do in my sh

Postby mmpetunia » Thu Dec 26, 2013 12:35 am

CCSVI is IMO a risky option at this point. i'm not suggesting that there is no merit in the procedure...maybe it does hold potential for helping PwMS feel better and decrease disability but currently there is not enough research out there for me to feel confident about the merits of the procedure.

now, if we were talking about diet then i am ok with a lack of research because 1) it's impossible to study diet and control for all of the variables; 2) the diets recommended for MS are by anyone's standards healthy, whole foods diets that anyone could benefit from being on. also, a diet is not invasive and it won't artificially alter important structures in my body. but CCSVI does. putting stents in veins can be risky and in some cases has been quite disastrous. if the stents move out of place there is not much that can be done and depending on where the stents migrate to they can become problematic.

additionally, many people, even those who are staunch supporters of CCSVI will tell you that after treatment they had a few good weeks to months and then their veins re-stenosed. all that money, pain, and risk for a few good weeks? it doesn't seem worth it to me. the success rate just isn't there. i haven't kept up so much on CCSVI lately because i decided it wasn't something i was interested in. maybe there is more information out there now, not sure.

when i first found this board one of the things that i loved was the free exchange of research and theories that can be found here. OP, i suggest that before you make any decision to read everything you can get your hands on about MS. the forums here truly are a wealth of information. additionally, visit your library and search their research databases for more information on the treatments that interest you. if you are so inclined, you might even do a little bit of reading on research methodology so that you can discern sound research from the less rigorous studies.

if you aren't sure yet then just keep reading and researching. you'll figure out what feels right. the meds are not all they are cracked up to be. plenty of controversy surrounds their efficacy, in part because most of the research has been carried out by the drug companies so its not very rigorous because of major bias and conflict of interest issues. i take copaxone and overall i think if you want something that is safe with few side effects it's the way to go. the jury is still out on whether it's actually helping or not (but that's true for all of the CRAB meds).

for me the bottom line is that it's all sort of a crap shoot. having MS is hard and there aren't any clear-cut answers either way. just make sure you take a close look at the cost vs. benefit of whatever treatment you choose and make sure that probability is on your side.
Dx: 9/8/11 RRMS
Gluten and dairy free diet
copaxone x3: let's hope the third time is the charm!
http://mylaceybrain.wordpress.com
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Re: Should I start MS medication? What would you do in my sh

Postby vesta » Fri Dec 27, 2013 8:06 am

Hello again:
Before considering venoplasty, I would check out skeletal obstructions. That is to say, the problem (around the cervicals, for instance) may be pressure ON the vein rather than a problem IN the vein. I'm going to reprint here my entire discussion on the 3 treatment options. Since I can control my MS without drugs (and I developed it before the drugs came in line), I don't mention them here.

MS: Three Treatment Options for CCSVI
Recent research into Professor Zamboni’s « Liberation Procedure » has focused on his idea that blood « refluxes » (backs up) into the brain/central nervous system because of stenosed or damaged veins, thereby triggering an inflammatory response which damages the myelin sheath and other tissue. He proposes opening blood flow through the stenosed veins with “balloon” venoplasty.

While results have been promising, questions persist. Not all people exhibiting stenosis of the veins have MS, not all MS patients have stenosis (or CCSVI). Some patients enjoy spectacular recoveries after venoplasty, others see little or no improvement. Through experience and the use of the Intravenous Ultrasound, Interventional Radiologists have dramatically reduced an early high rate of Jugular vein problems. Because of opposition to the procedure by those attached to the auto-immune theory of MS, CCSVI has been marginalized. The FDA’s opposition to MS Venoplasty (or PTA) outside of authorized clinical trials means that insurance companies in the US no longer will pay for the procedure (which even current researchers have declared without danger.) It is estimated that up to 30,000 MS venoplasties have been performed worldwide but reports on the outcomes are sketchy at best. These varied results seem to cast doubt on his theory. However, I believe his idea is substantially correct.

While the stenosed- vein- in -need -of -venoplasty theory is being questioned, the blood reflux theory is gaining ground. Dr. Zamboni’s insight has provoked a general theory of MS as an obstruction of free flow of Central Nervous System fluids (blood- arteries and veins-, cerebrospinal fluid, water). Indeed, veinous blood DOES reflux into the brain to damage it, but not necessarily because the vein is defective or blocked. For example, the problem may not be a problem IN the vein but rather pressure ON the vein by cerebrospinal fluid (or misplaced vertebrae) which obstructs the free flow of the blood.

In my opinion this gives rise to potentially THREE SOLUTIONS to the venous blood reflux phenomena associated with MS.

1) Relieve body tension or 2) Correct skeletal pathology or 3) Open blocked veins with venoplasty.


OPTION 1) RELIEVE BODY TENSION

This treatment option is the easiest and most accessible for most MSers. My site MS Cure Enigmas.net is meant to address principally the body tension factor which I believe in itself can trigger the veinous blood reflux leading to neurological damage. My approach is more practical than theoretical. I have a problem, I needed to find ways to deal with it. I trust my own experience, research and yes “radical” thinking can serve as the starting point to help others think through their own issues and find appropriate solutions.

DIET: My first healing beginning 1984 came through the treatment of a Kinesiologist/Nutritionist who determined food intolerances (to glutens, lactose, chemicals etc) and prescribed DETOXIFICATION, OPTIMAL DIET AND NUTRITIONAL SUPPLEMENTS. There have been many testimonies about impressive healing through diet alone. See Roger MacDougall, Dr. Roy Swank, Dr. Terry Wahls (You Tube: TEDx Iowa City “Minding Your Mitochondria”), or on the site This is Ms.com jimmylegs and for diabetics lyndacarol (leaky gut syndrome aka intestinal permeability) and Leonard ( A new concept for MS).

Some vein experts have said they can’t understand how diet change could possibly stop CCSVI blood refluxes. STRESS is the key word. Some foods can act as toxins against which the body mounts a tension-inducing defence. Tension alone can cause the blood reflux. Once removed, the body can relax to allow the blood flow unhindered through the CNS. And too optimal nutrition will heal any damaged tissue.

Unfortunately diet alone is not enough for me. I need other therapies to relax tension and enhance fluid circulation such as acupuncture, acupressure, kinesiology, French osteopathy or massage. (Dr. Wahl does more than diet as well since she electrically stimulates the meridian on her back which enhances blood/fluid circulation through the CNS). Swimming the crawl is by far the best therapy for me. A severe emotional trauma in 1987 triggered an attack even though I was scrupulously following my diet and now I realize I could have stopped it with blood circulation enhancement. In some circumstances optimal diet alone is insufficient.

When I read about “Liberation Therapy” summer 2010 I immediately requested an upper back/neck massage to send blood flow from the head towards the heart and it worked, I could stop an attack. Subsequently I treated myself with TENS Acupressure to open the blood flow, again with success. I’m convinced had I known this 20 years ago I wouldn’t need a cane to walk today.

Emotional stress, ANY stress, can force the blood into the CNS leading to an attack, at least in my case.

It is strange to me that vein specialists should doubt the power of emotion to impact veinous blood flow when one considers how blood rushes to the sexual organs given the slightest provocation.

OPTION TWO: CORRECT SKELETAL PATHOLOGY

The Chiropractor Dr. Michael Flanagan (upright doc) of This is ms.com gives a good basic description of what he believes is happening in MS.

From Thisisms.com Oct 25 2013 CCSVI and CCVBP upright doc
“ Sluggish blood, lymph and CSF circulation, however, leads to the accumulation of metabolic wastes and pathogens that can cause inflammation and immunological reactions. By the time MS signs and symptoms show up it's typically a combination of problems, including orthopedic problems that tend to get overlooked”
“I do agree that venous blood reflux is a probable cause of the supratentorial, periventricular and perivascular location of the classic MS lesions. (Violent venous reflux most likely occurs in whiplash type injuries. The course the venous blood follows from the vertebral veins into the brain is determined by the layout of the cranial vault and dural sinuses)...In my opinion, venoplasty causes a siphon effect that increases drainage of the the brain, which improves blood and CSF flow. It should be a consideration regardless of whether or not the patient has stenosis or faulty valves. (In some cases it may eliminate the need for CSF shunts.”” )End quote

Upright Doc believes that up to two thirds of MS patients suffer in fact skeletal problems that impede free flow of CNS fluids. If an accident triggers off MS symptoms, the first thing to consider is damage to the spine, neck and head. Dr. Damadian estimates it takes up to 11 years for MS to develop after an accident as the body structure deteriorates over time. When I hear that a man who does physically demanding work (or sport) develops “aggressive” MS, the first thing that comes to my mind is trauma to the spine/neck/head.

One will need to undergo diagnostic exams such as x rays and upright MRI’s, and will require Chiropractic adjustments and/or surgery. Therapists can be found under NUCCA (National Upper Cervical Chiropractic Association) or Atlas Orthogonal Chiropractors.
Resources: Dr. Scott Rosa – FONAR upright MRI. Dr. Schelling, Dr. Raymond Damadian

The Downside of Upright Posture by Dr. Michael Flanagan “.Dr. Flanagan's research into the fluid mechanics of the brain - including the unique design of the sutures and base of the human skull - led to the discovery of a clear and unmistakable link between upright posture of Homo sapiens and neurodegenerative diseases seen in aging adults. This "link" is the cervical spine - especially the upper cervical spine and base of the skull - which contains key circulatory routes for blood and cerebrospinal fluid flow entering and exiting the brain. “ (Quote taken from book’s blog)

OPTION THREE: VENOPLASTY

Once the above options have proved inadequate, PTA (Percutaneous Transluminal Angioplasty) or Venoplasty might be considered.

ThisIsMs.com. features a very informative CCSVI thread. See "Dr. Sclafani answers some questions" (which recently passed one million views.) It is particularly informative since Dr. Sclafani presents reports of venoplasties he has performed complete with photos. An excellent example revealing how CCSVI treatment has evolved can be found on page 519 May 21, 2013. Dr. Sclafani performed venography of "both dural sinuses, jugular veins, brachioicephalic veins, azygos vein, left renal vein, and ascending lumbar vein and the inferior vena cava". He has performed over 500 venoplasties.

I myself have decided against venoplasty. January 2012 I resumed my diet after a long interlude (1992-2012) during which I lost some mobility on my right side. Since I read about the blood reflux theory summer 2010 I have been able to stop or minimize MS attacks. Nonetheless I know I am gradually losing ground. During sleep the CNS fluids probably stagnate and cause some nerve damage. However, I am now 65 and assume I can still walk (with a cane) for at least 15 years (age 80!). I don’t want to take the risk of being worse off than I am now, because I really am just fine except for the relatively minor neurological deficits.

Let’s take another example. About 15 years ago a badly handicapped French woman told me that while in India she had enjoyed an Ayurvedic massage in which several women worked on her and afterwards she could walk normally again. This made no sense to me at the time, but now I realize she must have CCSVI venous stenosis. Her testimony resembles that of successful balloon angioplasty which opens the venous blood flow in MS patients implying that the massage opened up blood flow to the Central Nervous System. Upon returning to France she lost the benefits of the treatment. Acupuncture helped her, probably by enhancing blood circulation, but nothing like the dramatic improvement in India. She probably has a serious vein stenosis and is in need of angioplasty (or needs daily massages- an unlikely
possibility). Since massage DID OPEN her blood/fluid circulation, I assume her bony structure does not impede it. Young and faced with a rapidly declining condition, I believe she might well have been a good candidate for venoplasty.

OPTION FOUR: SURGERY AND VENOPLASTY

Donnchadh writes on Thisisms.com, under “Atlas Compression of IJV”
Nov 26 2013 “ My "hunch" turned out to be correct-there was a bone spur on the right hand side of the C1 atlas vertebrae which was compressing the IJV…”
Dec 2 2013…”Turns out that the IJV was flattened against a bony knob on the Atlas; in addition it was also thethered to it. The neurosurgeon removed [ground by diamond drill] this and the IJV is now completely free… The next step is to have a venoplasty to break up the stenosis… It is now apparent why all the previous venoplasty attempts had failed.”

Donnchadh was able to find a highly skilled OPENMINDED Neurosurgeon to remove bone spurs which were obstructing venous blood flow.

Obviously one will need a very skilled Surgeon to treat such a condition. Massage and Diet won’t work nor will Venoplasty alone. Her treating Neurosurgeon did not want to be identified given this unorthodox approach to treating MS.

Dr. Zamboni is continuing research on the multiple aspects of Neurodegenerative disease. Again on Thisisms.com see the thread “Dr. Zamboni’s SPECT & PECT research”.

With the venous blood reflux idea, Dr. Zamboni has let the cat out of the bag. There is an explosion of research into all possible ramifications suggested by his idea. Neurologists who are the first to see patients troubled by symptoms of paralysis should help direct them to appropriate therapists. It appears that will take time. For now patients must seek solutions in light of their own personal experience and research. I hope this synopsis will be of help."

Take your time in seeking the best treatment option(s), Seasons Greetings, Vesta
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Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Fri Dec 27, 2013 9:33 am

Thanks Vesta. I have looked at some of the CCSVI threads on TIMS. Unfortunately there is little on CCSVI here in Spain, I am waiting to get some info from someone who has had the treatment in Poland and for whom it seems to have been a success.

I wish I could you find doctors willing to at least take a better look at the bones in that area, as well as the veins and blood flow. There is a history of cervical issues in my family. An aunt and her son (my cousin) have always had pain in that area, and when my brother suffered from severe dizzy spells almost ten years ago, and occasional mild vertigo since then, he also saw lots of neurologists, and one suggested it could be the blood flow to his brain (I am thinking of maybe visiting this doctor at some point, as I wonder if he may be up to date with CCSVI).

Before my first event/bout, I remember feeling cervical pain when sitting at my desk in the office. Similarly I have always had bad posture, specifically in the fact that I would lean my head forward too much, something I am trying to improve. As for physical trauma, I was in a fight at the age of 17 and received some heavy blows (mainly kicks) to the face/head, and I was also in a car accident at 18 and suffered some light concusion, but didnt even go to hospital or suffer from whiplash. I am now 33.

I do believe there is something linking blood flow with MS in the majority of people. It would explain why for many diet and exercise helps, because that also affects circulation. However, I am also a firm believer in the role Vitamin D plays in all of this and the fact that there will never be a one cure fits all to MS, and that is what is partly holding a lot of possibilities back, no one wants to think that there may be several causes of MS and several different "cures"/"treatments" depending on the main cause, just like in aleopathic medicine there isnt just one approach to treating/curing cancer.

However, until that day comes along, I need to decide on whether to add something like Copaxone to my regime. I still heavily believe in good diet, regular exercise (I try to swim once or twice a week amongst other things), vitamins and supplements, LDN and I try to reduce stress. What I need to decide is on whether to give Copaxone a go or not and "wait and see".

I definately want to find doctors who will atleast examine the bone strutcture in the cervical area, but its not going to be easy.

THanks again Vesta.
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Re: Should I start MS medication? What would you do in my sh

Postby vesta » Fri Dec 27, 2013 11:03 am

Hello zjac020:
You may decide to start Copaxone and continue research into the blood/cerebrospinal fluid flow issue, those options aren't mutually exclusive. Consider cheerleader's husband (CCSVI thread) who was the first in the US to undergo venoplasty - with stents - and continues to take Copaxone (I think, one might ask her). I would also ask upright doc CCSVI CCVBP thread who has been advising Robni since the summer 2013. Robni underwent venoplasty with limited results and then decided to consider the skeletal issue and is now being treated by a US trained Chiropractor, in the Netherlands ??? (not sure where). His spine was apparently injured as a boy playing soccer (football). You might try to get an upright MRI of the spine.cervicals etc and or an Xray (are there Chiropractors in Spain?) Ask upright doc what you should do, he has been very helpful to Robni and others. I wouldn't ignore the "skeletal" or orthopedic question because if that is the root problem, it will crystallize and degenerate with age and there is a good chance you can get treatment for it, and if you ignore that issue I don't see how Copaxone or anything else can help much. Again, wishing you the best this coming year, Vesta
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Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Sat Dec 28, 2013 3:26 am

Thanks Vesta, will try and contact upright doc.

Since my CIS diagnosis in May I have been practicing exercise regularly and making an effort to improve back and neck posture and have been having some back problems. I don't recall specific back injury/trauma (although as I said I have received a few blows to the head when it was younger). My mum recalls that when I was young (10 years old) I would complain of back ache when carrying the school bag, but doctors found nothing (although they didn't even x ray me..). However as an adult I wouldn't say I have suffered from back pains. I had severe back pain after the lumbar puncture (all doctors except the neuros say that it sounds like I had inflamed meninges as a result of the lumbar puncture), I also had muscle contracture on the left trapezium which lasted two weeks or so and currently slightly pain in the left para vertebral muscle. I was x rayed about two months ago and they found mild scoliosis (in previous company check ups the doctors had commented on a curvature in the spine but said it was common in a lot of people) but it was just one simple forward facing x ray. What I also notice now is that when sitting at my desk I have discomfort from the height at which my left arm sits on the table which causes slight discomfort on my left shoulder. I don't doubt that my change in posture is influencing this, but something tells me there is more.

Chiropractors are not easy to find in Spain although they do exist.
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Re: Should I start MS medication? What would you do in my sh

Postby want2bike » Sat Dec 28, 2013 8:46 am

Dr. Bergman thinks you should have the alignment of the body checked out and corrected if you have disease. If you have scoliosis that could be the problem. Here is a video explaining this.

http://www.youtube.com/watch?v=zGmyUppmt-g
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Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Sat Dec 28, 2013 12:03 pm

want2bike wrote:Dr. Bergman thinks you should have the alignment of the body checked out and corrected if you have disease. If you have scoliosis that could be the problem. Here is a video explaining this.

http://www.youtube.com/watch?v=zGmyUppmt-g


Who exactly carries out these kind of adjustments? Chiropractors? Physios?

I have seen the video and I agree with what he is explaining and do live by it, but I haven't seen anything on scoliosis.i did note rectified cervical spines in several x ray images which I also do have (rectified cervical lordorsis), but finding a specialist who is familiar with all of this here in Spain from an MS point of view is nigh on impossible.
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Re: Should I start MS medication? What would you do in my sh

Postby vesta » Sat Dec 28, 2013 3:17 pm

I suggest that if you actually have some x-ray images, post them on the CCSVI CCVBP thread and ask upright doc what he sees/thinks. Don't even concern yourself or a therapist (probably a Chiropractor) about an MS point of view, you are seeking a correction to allow free flow of blood/CSF fluid through the central nervous system. You will probably have to wait until after the holidays to begin a therapist search, but once you start making contacts, often solutions present themselves.
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Re: Should I start MS medication? What would you do in my sh

Postby want2bike » Sat Dec 28, 2013 3:48 pm

Chiropractors do these adjustments. Dr. Bergman explains the procedure.

http://www.youtube.com/watch?v=H-bY7wvGs98
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Re: Should I start MS medication? What would you do in my sh

Postby daverestonvirginia » Thu Jan 02, 2014 9:15 am

"Study after study has shown that early treatment with disease-modifying drugs benefits patients with CIS," said Margaret Burnett, MD, assistant clinical professor of neurology and pathology at the University of Southern California in Los Angeles.
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Re: Should I start MS medication? What would you do in my sh

Postby zjac020 » Thu Jan 02, 2014 1:36 pm

I have seen one key study, the PRECISE study sponsored by Teva which then even received criticism for slightly false claims from the FDA. are there any other studies available?

I think everything points to starting the meds. However as I am on LDN for now my only real option is copaxone. I have followup with neuro on the 20th. I will propose the idea...
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