Monterey Bay Forum

What causes multiple sclerosis? Think of it in brief like a plumbing problem. Whe things don’t go down properly unfortunately things back up — and the backup causes a mess. How fix it? Clean out the plumbing so that blood moves properly around the body.

So is MS akin to a plumbing problem that can be fixed with surgery?

One hypothesis put forward by Dr. Zamboni of Italy is that there is insufficient drainage of blood from the brain and spinal cord. When veins get blocked they make substitute paths and that blood reverses flow (reflux) back to the brain. That reverse flow may set off the inflammation and immune-mediated damage that has been well described in MS. When the flow of blood becomes natural then the damage to the mylon will stop. Mylon can repair itself over time.

Dr. Zamboni’s hypothesis that CCSVI (chronic cerebrospinal venous insufficiency) contributes to nervous system damage in multiple sclerosis. In 35 individuals treated by Dr. Zamboni with vascular surgery using balloon dilation (J Vasc Surg 2009; 50:1348-1358) 47% of internal jugular veins went back to having restricted blood flow. That means that 53% — more than half — no longer had any venous obstruction.

Michael D. Drake of Stanford Hospital was doing some of the procedures operations such as Dr. Zimboni did but recently halted. In December 2009 the hospital shut down his 40 patient program. One patient died going home on a plane and another patient had a stent move to the heart requiring emergency surgery. Next possible date for more procedures done at Stanford is tentatively set for June, 2010.

People with MS can look into getting a MRV (V for venous) exam to determine whether their veins are clogged. There are various research programs that MS patients can enroll in.

And there are promising therapies that can assist: low dose naltrexone therapy for one. So far as I can see reading The Promise of Low Dose Naltrexone Therapy by Elaine A. Moore and Samantha Wilkinson and other sources the only BIG no-no is no use of any narcotic while taking LDN. LDN may be helpful for a wide variety of disorders including cancer, Parkinson’s and autism.

Do you know someone who lives with multiple sclerosis? Pass this on to them. On the main page for the national organization for multiple sclerosis you can watch Dr. Zamboni and others discuss the most current findings. Over 140,000 people from all over the world signed up to watch it on the Internet April 14, 2010.That web case is available to watch on the national home page for multiple sclerosis.

If this is a plumbing problem treatable with surgery think of how this will effect the pharmaceutical companies that make beta-interferon and Tysabri. Beta-interferon carries flu-like side effects and Tysabri has lead ot fatal brain disease in rare instances. The pharmaceutical companies make large donations to neurologists who write prescriptions for MS patients.

Anyone who lives with a chronic health condition and who is deteriorating can become quite dependent on their doctors — the neurologists — who have been prescribing medications to them for numerous years. Switch and get angioplasty for a plumbing problem? Get off medications? Take vitamin K and other vitamins and supplements? Use low dose naltrexone to heal the body? Wow! That is a huge step in a different direction.

Yes — the “experts” are having “turf” wars. And the patients and their families may feel like pawns in a chess game. That’s why the Internet is so powerful. Easy to connect with others and for pawns to become Queens and Kings. And for persons with MS to take charge of their own health and destiny.

Some ways for MS patients and their families to take charge:
Connect with other families. Who are other local families dealing with MS? Use the internet to send group e-mail back and forth. Stay in touch. Share stories.

Use technology so you can SEE the persons you are connecting to. All it takes is a laptop, SKYPE and a web camera if not already built into your laptop. This way the person with MS “gets out” and loved ones and others can “get in”. And this way the person with MS can meet new people and start other relationships. That is the wonderful thing about interactive technology. A person with MS may first only want to see their daughter or son. Later, they will want to see and interact with new people they meet over the Internet.

MS tends to be a women’s disease. Male spouses and significant others need to be involved in creating a supportive framework for healing: MS diet, regular contacts with people they love, getting out into the community, assisting the person with MS to do activities that bring pleasure.

Very importantly: help the person on a daily basis to do new things and learn new skills and grow spiritually and emotionally as well as physically. People sense when their skills and abilities are growing or shrinking. So help ensure that skills grow.

Keep track of growth with a notebook. Look where you were and see where you are now.

Encourage independence. Assist MS patients to take initiative, make choices and make decisions. Start with the little decisions — what to wear and eat — and move on to larger decisions. . Such as, is this procedure one that you really want? What is the downside to doing this procedure?

Talk to your doctors. Why not do this form of angioplasty — once proven appropriate based on well done research — right here in Santa Cruz County? Dominican Hospital is excellent and we have first class surgeons who can do angioplasy procedures. For example, Dr. Benjamin Potkin is one local doctor who has the experience and necessary abilities.

Get the best supplements possible. Louden Pharmacy on 41st Avenue is one such pharmacy. The pharmacist, Ray, can provide Low Dose Nalrexone per prescription from your doctor. And he can refer you to professional people who can hone in on other ways to improve your general health.

Get out into the community and see people and do activities. For example, Christ Lutheran Church of Aptos just started a garden so people in the community can grow their own. Part of the garden is for persons with disabilities. In that area the beds are raised and it is wheel chair accessible. Seeing plants grow that the MS patient selected and planted is one way to get out and meet new people. Yesterday, I heard about the garden on the radio and got a plot right next to the gate. That way clients who cannot get out of the car that day can still see their strawberries and tomatoes grow!

And be sure to take care of yourself. It is stressful for family members dealing with MS. What MS patients need, family members who take care of persons with MS also need.