Diagnosed 1980: How MS Evolves

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Diagnosed 1980: How MS Evolves

Postby vesta » Tue Nov 20, 2012 2:34 pm

My career as a ballet dancer ended with a Multiple Sclerosis “attack” when I was 32 years old. I was under extreme pressure, and I cracked. It is said that one can have one MS attack and never another. I believe this. Now that I know that MS is in fact a venous blood circulation disorder, I can imagine the stress being so extreme that it literally pushes the blood right back up into the brain and spinal cord, like a pressure cooker. If that one time extreme pressure experience is never repeated, chances are one can recover and never have a repeat.

Dr. Sclafani has observed that 85% of the vein narrowings in M.S. are in fact valve problems. Let’s say that each attack “blows” the valves. Eventually the valves weaken and fail, either causing a total vein obstruction, or an ongoing blood reflux, transforming the relapsing/remitting MS into various forms of progressive MS.

I believe that in the early Relapse/Remit phase (I think of it as the "spongy-wet" phase) one can heal completely as I did 1984-1985. Thereafter I was doing so well I "forgot" I had MS, "forgot" my therapies, and the summer of 1993 had an "attack". That's when I began to limp, I didn't recover as I had in the past. Partly perhaps because I wasn’t following my healing protocol. On the other hand, once age sets in, I think it's harder to recover, the "plaques" become like dried out scabs.
I believe MS becomes Progressive when the valves weaken after numerous assaults (blood reflux attacks) resulting in an ongoing reflux, especially at night when lying down. Or the veins collapse altogether. Also, the brain gradually loses its ability to recover from the damage caused by the refluxes.

Anyway, I think it’s unfortunate to launch into drug treatment without considering that MS is a blood circulation disorder (called CCSVI) which can be treated either “naturally”or “medically”. (Immunosuppresive drugs are apparently used only in Relapse/Remit MS) I have developed self help techniques which slow the disease progression (detoxification, optimal nutrition, supplements, self acupressure, any treatment which enhances blood circulation). Mid 1980’s I completely healed from a Relapse/Remit MS. I now have probably reached a Progressive stage, but my self help techniques are slowing dramatically the Progression. I don’t expect to recover as I did in 1985. But I CAN stop an attack.
This past August (2012) a friend’s betrayal so shocked me that the following morning I woke up with the muscles of my good left lower leg and foot in spasms/cramps. This is a very bad sign, a warning that a blood reflux into the brain had damaged the corresponding nerves. These nerves control the “releveur” muscle which lifts up the foot when one walks. I already have “foot drop” on the right side, I can’t afford to lose the left. I thought before going to bed the evening of the shock “I’ll treat myself with the TENS acupressure in the morning.” BIG MISTAKE. I should have asked for a neck massage forcing the blood down towards the heart that evening. Or done it myself. Lesson? DON’T WAIT! During the night the blood must have backed up into my brain. And even though the TENS treatment the following morning seemed to stop the reflux, it has taken almost 3 months for the left lower leg symptoms to clear up. So, yes, the healing process is slowing down. And it doesn’t take much stress to bring on symptoms.
When I first heard of the Dr. Zamboni’s CCSVI blood reflux theory summer 2010 I immediately began self treatment to prevent the blood reflux and control the MS Progression. The Brain fog is gone as well as the debilitating fatigue. No great improvement in the right leg and arm, but no further decline either. And the recent scare warned me against taking my improved health for granted.
I am still ambivalent about undergoing angioplasty even though there have been major improvements in treatment since 2010. At first there were numerous reports of restenosis of the treated veins as well as thrombosis (blockage) which suggested that one could be worse off after treatment than before. No thanks. The use of Intravascular ultrasound has radically improved outcomes. The following quote by Dr. Salvatore Sclafani was taken from PubMed.
« Tech Vasc Interv Radiol. 2012 Jun;15(2):131-43. doi: 10.1053/j.tvir.2012.02.006.
Intravascular ultrasound in the diagnosis and treatment of chronic cerebrospinal venous insufficiency.
Sclafani SJ.
Fresenius Vascular Care, and Department of Radiology, State University of New York, Downstate Medical School, Brooklyn, NY 11215, USA. Salvatore.sclafani@gmail.com
Multiple imaging modalities have been used for the evaluation of chronic cerebrospinal venous insufficiency (CCSVI). These include Doppler ultrasound, magnetic resonance venography, computed tomographic venography, and catheter venography. Although each of these tests is considered to contribute valuable information to the evaluation, each modality has deficiencies, which can impact treatment. Intravascular ultrasound (IVUS) has a role in this evaluation owing to its ability to accurately assess vessel circumference and cross-sectional area in real time. This can aid in identifying significant stenoses and optimizing balloon sizing during angioplasty. In addition, intraluminal abnormalities that may be difficult to see with venography can be identified with IVUS, which can further determine when angioplasty for CCSVI is indicated. Finally, IVUS can identify potential complications of angioplasty, including dissection and thrombus formation, allowing for rapid treatment. As a result, IVUS is an important part of an evaluation for CCSVI and, when available, should be used to identify patients who may benefit from endovascular treatment.
Copyright © 2012 Elsevier Inc. All rights reserved.”

(I myself would drink raw freshly extracted vegetable juice after angioplasty to heal the treated veins and prevent scarring/thrombosis.)

For now I prefer what I’ll call “natural” to “medical” treatments, especially because I don't think I have a real venous obstruction. My veins may seize up or narrow when stressed and the blood circulation can be released with massage or an "energy" therapy. Maybe the valves “stick” and the TENS treatment or massage opens them. (I first heard of liberation therapy 2 years ago. I have found a simple neck massage forcing the blood down towards the heart is enough to stop an “attack” for me.) However, now that I'm older (sounds better than "old") I can feel the blood “stagnating” in the neck every morning and even though self acupressure or swimming gets the flow going, I know some Central Nervous System (CNS) damage is occurring and the damage accumulates. (If I get stressed, I can stop the blood reflux, but again any reflux means some damage.) If I had known of the CCSVI theory 20 years ago I wouldn’t need a cane to walk today.

Maybe 15 years ago a French woman named Christine described to me an ayervedic massage performed on her in India by several women working together. Afterwards she enjoyed a complete recovery from her MS which resembles the transformations now enjoyed after successful Liberation Therapy. I don't know how long her recovery lasted and it certainly disappeared after her return to France. She was desperate to return to India for another recovery massage. This story made no sense to me at the time she spoke. Now I understand that massage must have overcome whatever resistance existed in her veins to impede her blood circulation. She was going downhill fast when we last spoke and then we lost contact. I can't find her, to tell her she was right, to suggest she get angioplasty if possible. Because unless she could get these profound massages every day, I think she needed medical intervention which was unavailable at the time. She didn't want to take the MS drugs, that "saloperie".as she put it. It's sad that Dr. Zamboni's news has come so late for Christine and me, (and especially the courageous Annette Funicello), but it's crazy to ignore this idea now.

Should one decide to undergo angioplasty one needs to find an experienced interventional radiologist such as Dr. Sclafani who uses Intravascular Ultrasound. He reports that the use of the intravenous ultrasound catheter has reduced complications to 1.3 % in a study of patients he has treated. However, some patients will doubtless be disappointed if 1) the brain damage is so old that re-established blood flow won’t heal past damage or 2) other veins besides those treated may continue to restrict blood flow.
The worst outcome would come if one’s condition actually worsens. I assume Dr. Sclafani can be reached directly in case of complications.
The recent entry in the “Dr. Sclafani answers some questions” in the CCSVI thread by Aliki has revived my fear of intervention. (It’s like a pregnancy, there may be a 1.3% risk of getting pregnant, but once pregnant you’re 100% pregnant.)

Nov 18, 2012 4:23 am
“Dear Doctor,

I had the procedure by you at the 28 September with my friend Valentina . As you remebrer I had my last relapse at 26 of September and it was really bad.
After the procedure I noticed some difference on the relapse symptoms and 2 weeks after the diplopia left .
My problem is that 20 days ago I started to get worst at ccsvi symptoms . Fatigue , cog fog , headache , instability , deaziness and the fact that I cannot see well the colors , depression are situations that I didn't have before in that grade and now I don't feel well .
I think that something doesn't go well . Something is changed . I did the ultrasound and it didn,t show that I have something .
Now I am desperate . Specially in the mornings I feel worst than ever , moreover I cannot stand in a place with many people , I cannot tolerate the noise and this is one of the worst thing because I am a teacher .
My MRI that I did at 6 of November is full of lesions . One is 11 and the other is 8 mm and there are some others .
I know that I have the clot in my left jugular vein but this I had it from last year and my ccsvi sympoms were not so bad
Well I am thinking all the time what is going wrong with me and I feel so bad . Will I get better or this will be my life from now on?
I wait every day a sign that something will change and I will feel better but there is no sign . Only the same situation and now that the cold weather comes I get worst on my symptoms .”

So there always exists a risk and I myself don’t want to take it because I’m doing well enough without it. (I don’t know any more about Aliki than is written in the post. Did she have a previous intervention which resulted in a blood clot? Obviously if you have a blood clot in the vein you shouldn’t be massaging it. I believe I am worse in the morning because the blood stagnates and backs up during the night. I suspect this holds true for her as well, that the valves which prevented the venous blood from backing up have failed. She might try sleeping at an incline to reduce the reflux. Also, since a neck massage seems unadvisable in her case, I believe she should try to get a treatment such as acupuncture to boost her blood circulation, (See the Acupuncture topic on my site.) She could eventually treat herself daily with TENS self acupressure.

I realize there are those who want to head off these suggestions for fear they might discredit the CCSVI/angioplasty treatment. I disagree. Natural self help therapies are suggested as a complement to angioplasty, something to try as a first option (and perhaps an alternative if things go bad.)

See MS Cure Enigmas.net
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Re: Diagnosed 1980: How MS Evolves

Postby DougL » Thu Nov 22, 2012 5:44 am

vesta wrote:I had the procedure by you at the 28 September with my friend Valentina . As you remebrer I had my last relapse at 26 of September and it was really bad.

I am not trying to say there is a connection between CCSVI and MS. I do not know enough to offer an opinion.

but one has to wonder (assuming the above quote is correct) what would have happened if the "procedure" was done 2 days before the last relapse instead of 2 days after
vesta wrote:So there always exists a risk and I myself don’t want to take it because I’m doing well enough without it.

that is a great comment. there are risks going out and crossing the road but i do it because it is worth the risk. you are wise to weigh the risks when making your decision.

i am happy that you are doing well and hope it continues.
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