I haven’t been posting much here because I’ve pretty much been immersed in research since my March 1st diagnosis of multiple sclerosis. I haven’t wanted to turn this into my-MS-blog… Though I have been thinking about putting up a separate blog in order to catalog all the stuff I’ve read. On top of that, there hasn’t been much positive stuff going on what with the Virginia Tech murders and the sad state of the planet underscored by every Earth Day piece in the media I’ve encountered since last Friday.
The amount of paper I’ve accumulated by printing scientific studies and various web pages was so large it had to be organized into a three-ring binder. As of now, based on everything I’ve learned and my inherent distrust of authority (including the mainstream medical establishment) I’ve decided that I’m going to manage my disease with an ms-specific diet, supplements, exercise and a generic drug called Naltrexone.
The day Mel and I went to the neurologist’s office almost a month ago, we arrived about 1:15 for a 1:30 appointment. I was informed that my appointment was actually at 2:30 (it really wasn’t, there’s no way I’d made that mistake) but that I’d canceled it. What?!? No worries, they’d get me in. We waited for about half an hour and then they put us in an exam room where we waited another hour. The doctor walked by a number of times and then finally stuck his head in and said that he needed to see someone else first because I wasn’t expected. He was nice about it and I said we didn’t mind the wait.
When we did finally see him, the doctor reconfirmed my diagnosis and offered DMDs (disease modifying drugs). The drugs are taken by weekly or daily injection, depending on which one you choose. Though the doctor said I could take some time to think about it, Mel and I looked at each other and said “the Copaxone seems good” and I agreed then to try it. Big mistake, more about that later.
Answers to questions we asked this guy – an ms specialist – about diet, over-the-counter medications that state they shouldn’t be taken by those with MS, and bee venom therapy (something we’d read about) were perfunctorily dismissive. The nurse who came in the room afterwards to enroll me in the drug plan and discuss the daily injections asked us several times during the conversation “Did the doctor mention that to you?” After we said no for the third time she offered an excuse to the effect that she thought the doctor wasn’t feeling well himself and he was trying to wrap up to leave for his holiday vacation. It was nearly 4:00 PM on the Friday before Passover.
Altogether, not a great experience and my impression of the doctor was that he is a bit of a hot shot. He’s probably about 10 years younger than me and though he was nice, he was a bit too brusque and blunt. The more I’ve thought about how the day played out, the less I like him. But, I have decided to see him once more before making a decision to find someone else.
To be continued…
“Answers to questions we asked this guy – an ms specialist – about diet, over-the-counter medications that state they shouldnâ€™t be taken by those with MS, and bee venom therapy (something weâ€™d read about) were perfunctorily dismissive.”
They were perfunctorily dismissed because they don’t work. The DMODs do work to some degree and have multiple clinical trials that have validated their efficacy.
I know it sounds great to think there is some ‘secret’ therapy that “big pharma” has kept hidden but the real answer is there aren’t and once a lesion forms on your brain it doesn’t go away.
Naltrexone study – see page 12 – NO benefit for MS http://www.klinik-dr-evers.de/downloads/LDN-Study_eng.pdf
Bee Venom and others
It is your brain so choose what you like but choose carefully.
Thanks for your comments, AC.
I’m sure the doctor gets all kinds of dumb questions every day. My real point here was that he wasn’t especially empathetic towards a new patient (and partner) who is overwhelmed and frightened. The dismissal of our concerns could have been much more kind and gentle.
I was skeptical of BVT when I heard about it but my partner wanted to ask anyway.
I don’t think there is any ‘secret’ therapy but I do think there are more options than CRAB drugs.
The Naltrexone study you cite was on those with PPMS and SPMS, not RRMS, and the source of the data was “anecdotal evidence taken from approx. 40 self-reports from Germany and more than 1,000 self-reports from the US.” Despite concluding there was no difference between LDN and a placebo, they do concede that there were some positive effects that require further study and that “when effect is obvious continuation of medicating [with] LDN is recommended.”
According to everything I’ve already read, LDN is not really effective for progressive MS and that a morning dosing time (as used in this “study”) is less effective than a bedtime dosing.
An LDN trial is currently underway at UCSF (http://mscenter.ucsf.edu/research.htm) and I will be very interested to see the results.
Really, you can get any study to say anything and I’m betting there’s a big correlation between results and funding for most. I’ve read independent reviews of the Copaxone trials that state it’s ineffective. Do I believe that? Not necessarily. But I don’t believe it any less than I believe that it might “work to some degree.” I don’t believe definitive proof exists one way or the other, in part because it’s a very individualized disease and not every treatment is effective for everyone.
I’m well aware that I’m making brain decisions.
Okay, you lost me after PPMS, SPMS, not RRMS…
Regarding quackery… Call it whatever you want but non-traditional treatments DO work with some patients.
Witness: a friend of mine diagnosed with breast cancer. Opting against surgery and chemo (to everyone’s dismay!) she went the holistic/homepathic route and after one year was in full remission. Three years now and no new cancer. Sure it was a radical lifestyle change and everyone thought she was nuts but hey – it worked.
Also, I grew up with a bunch of Christian Scientists and while I don’t buy (any) much of it, I did see some medical “healings” happen that just never should have happened without western medicine. The mind is a powerful tool.
All that aside…
I agree Dog, in general, doctors need to do a better job of listening to their patients and explaining ALL options.
And why am I not surprised that you already have a 3 ring binder full of research?
The fact that something appears to work for an individual does not mean it is broadly applicable to others. You only know what your friend told you not what she actually did. . .perhaps the doctors suspected cancer and she told you she had it, perhaps she was also having radiation therapy, etc. . .and as far as Christian scientists (or others) note that only diseases that are hard to demonstrate EVER get healed…toothaches, backaches, you never see someone that was blind from birth get their sight back, etc.
There was a study a few years ago by a researcher on Christian healing and he surveyed several Christian healers and asked each of them for their three best examples of healing, which he then followed up with. Net/net, each and every one of the patients told of being miraculously healed and BELIEVED it. When he asked for (and received) their full medical records, ALL of them had received traditional medical care (surgery, medicines, etc.) but claimed divine healing and made no mention of the intervention of doctors.
Were they lying. . .maybe/maybe not. There belief system caused them to discount what had actually ‘fixed’ them and place it somewhere else. In the end they were better which is all that matters.
Re the mind being powerful, absolutely, witness the placebo effect which in some trials is MORE effective than the medicine being tested. I read a book recently “Human Trials” which recounts several drug trials, etc. that were discounted for this very reason (MS drugs). Some doctors think that placebos should be part of their arsenal for treating diseases in lieu of the ‘real’ drugs.
BTW, one book you may want to read if you haven’t already is “Curing MS” by the head of the Boston Women’s MS center – fascinating read.
The more you research, the better questions you can ask your physician. Doctors take informed patients a lot more seriously than they do the incurious ones.
This is your disease- your full participation in how it’s treated is laudible.
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