Thursday, May 27, 2010

My MS Story Chapter 38 – Searching for a Cure

When you are diagnosed with MS, you learn that it’s a chronic, debilitating disease without a known cause or cure. That's bad enough. But when you are diagnosed with Primary Progressive MS (PPMS), as about 10% of us are, you're also told that your disability will likely be worse in the long run, and that there are no treatments which will even slow down the disease, like there are with the more common Relapsing Remitting MS (RRMS).

When I received my diagnosis I turned to the internet to search for treatment ideas. Maybe there was something out there that might work for me, even if it was not FDA approved for PPMS. Maybe there was something overseas. Perhaps there was an experimental treatment of some sort.  I imagined there might be a vast conspiracy to hide the true cure, and all I needed to do was expose it. Well, maybe not.  But there had to be something, somewhere.

Through this quest that I’ve been on for nine years, I’ve learned more than I ever wanted to about doctors, hospitals, medicine, and what makes it all go ‘round. In addition to my MS research, I’ve also learned so much from the experiences of my aging parents.

images1 A number of years ago my father was diagnosed with lung cancer. He doubted the diagnosis, so his more educated and supposedly more sophisticated sons brought him to see another doctor for a second opinion- diagnosis confirmed. At the conclusion of the surgery to remove part of one of his lungs the surgeon came to the waiting room to tell us the good news that my father didn’t have lung cancer after all- major surgery on an elderly man for nothing. I was shocked. I had no idea that two competent doctors could both make this sort of mistake. I wasn’t angry or disappointed with those doctors. I simply needed to adjust my expectations about the capabilities of modern medical science. 

In 2008 my aging and quadriplegic mother went into the hospital with overall weakness and disorientation. While the doctors scratched their heads about what was causing this condition, my mother contracted pneumonia and died. I harbor no resentment toward the doctors. They did their best, but this was simply more evidence that for all the amazing medical advances we enjoy, people still die of rather straightforward causes. Again, I needed to re-calibrate my expectations of our medical system.

Then there was PPMS, which was different from my parents’ situations because nobody even pretended to know what to do about my disease. My neurologist was the first to admit that he had no weapons with which to fight it, but that he would support me as I scoured the earth for ideas.

imagesCACR4N0J My neurologist accurately predicted that I would have an aggressive course of MS. At the time of my diagnosis a cancer drug called Novantrone was in clinical trials for PPMS. It seemed like a radical course of treatment for somebody who had only a slight limp and some general leg weakness, but we did it nonetheless.  This move set the tone for the aggressive approach that we have embraced, even to this day.

To read about my Novantrone experience click here and here

After Novantrone, we tried a host of other treatments, none of which helped me, let alone cured my MS.

Eventually I enrolled in a clinical trial for a drug called Rituxan. The trial seemed to slow my progression for the first year, but then lost its effectiveness afterward. To read about this trial experience click here.

The media is all abuzz about stem cells, both because of their exciting possibilities and because of the ethics controversy surrounding embryonic stem cells. In 2009 I learned of a clinic in Israel which was, and still is, treating MS patients with adult stem cells (as opposed to embryonic stem cells). The cells are removed from the patient’s own bone marrow, processed over a period of weeks, and then reinjected into the patient’s spinal fluid and blood stream.

I ran this concept by my neurologist, who did a little investigating for me. The clinic was indeed legitimate. However, the likelihood of success would be anybody’s guess. I spoke with a patient who had received stem cells at the Israeli clinic and had improved immensely. I began to inch closer toward signing up for the treatment. The biggest obstacle was the $40,000 price tag.

While I was trying to round up the money for the Israeli treatment I learned about CCSVI. I was never completely comfortable with the stem cell concept. I had not heard a coherent explanation of the mechanism by which this particular stem cell treatment could help or cure my MS. It would have been a huge leap of faith, based only on anecdotal success stories. That wasn't the case with CCSVI. I couldn't predict if it would work or not, but at least it made sense to me.

MS patients worldwide are insisting that governments and MS charities fund continuing CCSVI research. Some patients, like me, decided that they could not wait the 5 to 10 years it would take to fully vet this idea, and underwent experimental CCSVI treatment procedures. I had no better alternative, and due to continued disease progression, patience was not an option either.  It’s still too early for me to assess the effectiveness of the treatment I underwent in March of 2010. 

For an accounting of my CCSVI treatment experience, click here.

Although my quest has not yet resulted in a “cure” for my MS (unless the CCSVI procedure works), I have still benefited from the experience. I now understand how vital it is that patients become informed, vocal advocates for themselves. This is true when the diagnosis is simple and the treatment options are straightforward, but it is even more crucial when the diagnosis and treatment options are complex, as they are with me. 

If you only passively listen to what is explained to you during a short conversation with your hurried doctor, you are missing an opportunity.  These appointments should be a conversation, not a lecture.  Be prepared for your appointments. Ask questions (write them down so that you don’t forget). Conduct research on your own. Dare to challenge your doctors. Become an engaged, informed patient, and you will improve your chances of a successful outcome. As long as you are respectful, and as long as your doctor is not a complete jerk, your self-advocacy will be well received. And if your doctor is a jerk, then find a different one.   

If you are uncomfortable approaching your doctor in this way, then bring along a friend or relative who isn’t. 

Despite the fact that my quest for a cure has so far come up empty, I still hold physicians in high esteem. For the most part, they represent the best in human virtues: intelligence, empathy, and work ethic.  But this is your life, not theirs. Take control of your own medical care.

4 comments:

  1. I really enjoyed reading your post as usual (This is my first comment since I am a newbie to MS world). I am an engineer as well, I have an M.Sc in environmental eng. I am also a probable MSer.

    I have done lots of research since honestly I cannot trust medical community any more. I feel they play god and have zero tolerant for criticism god forbid providing them with information. There are very few cures for majority of the diseases over the past 50 years. If the medical equipments are improved they are engineers who are advancing the equipment not medical doctors.

    Just one thing, upon researching, I realized that Lyme disease is a major imitator of MS and there few cases of MS patients that were diagnosed by Lyme later on. As far as I understand in adult stem treatment, patient goes through a period of chemotherapy which is define as bombarding the body by very strong antibiotics like drugs that kills micro organisms (i.e., bacteria causing Lyme). I think the people that benefit from this are people that were misdiagnose with MS and in fact they had Lyme disease.

    Anyway it is just a theory, but who can talk to this arrogant medical doctors. I just feel they should provide the engineers with primary information and go from there. We gave the medical doctors too much credit which they do not deserve.

    I do not want to attack any profession and just for the record, my parent-in-laws, my uncles, and my brother are medical doctors. I just saying that as an engineer I've learned to update myself and stay on top of my field of profession. I feel this is not demanded from medical doctors.

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  2. Mitch,
    Thank you for your spot on commentary and advice. I agree one hundred percent. However, it's certainly advantageous to be retired and have the time and clarity of mind to advocate for oneself. I hate to imagine having to do this while attempting to manage the pressures of raising and providing for a family. Well done!

    Charlie

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  3. Nice post and this post helped me alot in my college assignement. Gratefulness you seeking your information.

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  4. A decade ago, after a year on oral antibiotics for Lyme disease, a very reputable Infectious Disease Specialist treated my Lyme disease with an intravenous antibiotic for a while. It still didn't cure me. After a few more months of oral antibiotics, we both reached the conclusion that it was time to give up on those methods for me. During the course of treatment I learned of many stories of misdiagnosis involving underlying Lyme disease. Even Yale had a bad reputation among misdiagnosed Lyme disease sufferers. One involved someone collapsing in their waiting room after progressively getting worse over the long course of trying to get diagnosed, then getting diagnosed and helped somewhere else. I'm not sure if what finally helped me would help you, but to make a long story short, what finally helped me most is Garlicin. It has allicin in it, which is a natural antibiotic that forms when mashed garlic is exposed to air for 15 minutes or more. Garlicin is enteric coated so it makes it past stomach acid and releases in the intestines so more of it gets into the blood stream than if you swallow numerous cloves of mashed garlic every hour (like I did until I found Garlicin). (Obviously, I was desperate). Unlike pharmaceutical antibiotics, bacteria do not develop a resistance to it. I took one each waking hour. My symptoms cleared within a few days, but I kept taking it for two weeks to keep any residual Lyme bacteria from colonizing, then gradually cut down to none. Once in a blue moon I feel similar suspect symptoms and I take Garlicin again, maybe for just a few days depending on how bad my symptoms are. The only possible adverse effects I know of are the smell (oh well) and that any form of garlic can thin your blood, which is normally fine, but may be too much combined with certain meds. Because of the quantity consumption involved, get the plain Garlicin, not the ones with vitamin E or whatever else.

    I thank you for your Bob's Discount Furniture Power Pedic Bed review. That's how I found you. Your story convinced me to get one for my hubby.

    Kitty in Mystic

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