A Month of Pain

Just over a month ago, I started having a pain in my left hip whenever walking or even just turning over in bed. At first I didn't think much about it, since my poor walking puts a lot of stress on that left hip and lower back, but now this new pain was making the walking worse and also causing me to fall: a shot of pain would make it suddenly impossible to put any weight on my left leg and down I'd go.  However, after a week of excruciating pain, I got into the Doc's office for a diagnosis and treatment.  The diagnosis was bursitis and the treatment was a shot of cortisone.  The cortisone worked fairly quickly: most of the pain was gone in about 5 days.  However, I was left with a continuing pain in my upper left glute and left quads, especially apparent when walking, standing, or turning over in bed. My physiotherapist and doc say those are probably muscle strains made worse while I had the bursitis, and that letting them heal is the best thing to do. In the meantime, the ongoing pain seems to be making me feel tired all the time: I can't fall sleep well at night, but take naps during the day are a respite from the pain/discomfort.

The upshot of all this is that I haven't gone swimming for over a month (worried about both getting into the pool safely, then be able to do the crawl properly given my glute/groin pains).  I've only biked a few times because I'm usually just too tired to be interested in going biking. I'm only now getting back to my physio, pilates and yoga routines.

A month of significantly reduced quality of life. I sure hope I can get back into my full regular exercise regime again soon.

Anne Kingston, CCSVI and MS

Here is another great article from Anne Kingston:http://www2.macleans.ca/2013/09/24/time-to-liberate-liberation-therapy-from-ms-3/.  There is also a Facebook link to all of her articles on the subject:https://www.facebook.com/notes/ccsvi-ivcc/anne-kingston-of-macleans-magazine-articles-on-ms-and-ccsvi/415901201807268. I'm going to make sure I have that bookmarked, because it's a great source of information, tracking the evolution in thinking about CCSVI.

Getting older and MS

Another good blog post from Mitch: http://www.enjoyingtheride.com/.  

On the Cannabis - Part 2

I've been on nabilone for over a month, and I'm quite sure that is really helping my sciatica (and perhaps other neuro pains). I saw the difference in a couple of weeks, but waited until now to make sure that it wasn't just coincidence that my sciatic pain has greatly decreased.  However, it's been over a month: I haven't this long of a respite from the pain in years, so I'm quite sure it's the nabilone that's doing it.  So far no side effects except, perhaps, some increased lethargy. Wonder what some real weed would do?

Physio, Pilates, Yoga, Swimming and Biking

A very focused physio regime along with a specially-designed Pilates program seem to be slowly paying dividends with respect to strengthening some of my muscles that are very weak, particularily in my left leg. It's good to have health service providers that really want to make things better for me now even though the long-term prognosis is for more deterioration.

On the Cannabis

I've started using a precribed synthetic cannabinoid called nabilone to try to help me with my chronic pain, particularily my sciatica.  I'm on the second week of a three-week ramp-up period for the drug. My sciatica has been better lately, but its hard to say if the drug had anything to do with it since it varies day-to-day anyway. It would nice to have something for chronic pain that doesn't have bad side effects or sap all my energy.  I'll let you know how it goes.

Cognitive Benchmark

Today I got the results for the set of cognitive tests I took about a month ago. I passed (hehehe). In any case, comparing these results to the results of the same tests done 3 1/2 years ago (just before my "liberation"), none of my measures (memory, cognitive performance, etc) had deteriorated.  So my left-side weakness is getting worse, but my brain hasn't changed.

Reply to anonymous prof

From my perspective, CCSVI treatment is most likely to help if you are afflicted with balance, fatigue and autonomic function problems.  Whether it helps anything in terms of long-term disease progression is anybody's guess.  Don't believe those who say they "know" it is a hoax OR that they KNOW it is a "cure" for MS: the international Cochrane review meta-study of CCSVI research says that the jury is still out on any claims, be they positive or negative.  Note: I collaborated on the write-up of the meta-study.

The Importance of a Good Physiotherapist

While the strength on the left side of my body has continued to deteriorate, I'm not giving up without a fight. Besides Pilates, yoga, swimming and biking, I've been seeing a new physiotherapist who seems as interested as I am in trying to make the best of what I have. She is working hard with me in trying to figure out what exercises I can do to reduce the impact of my disabilities and give me the best possible quality of life. In fact I have already seen some improvement in some of my capabilities and this has given me hope that my mobility may improve, or at least not decline as fast as it may have otherwise.

I have had experience with some physiotherapists and healthcare providers who, upon knowing that I have MS, appear to have a rapidly declining interest in working with me. In some ways I can't blame them, since it must be hard to work with someone who is almost certainly going to get worse despite your best efforts, but it still makes me angry to think that I am in worse shape than I might have been if I had had the right physiotherapist three years ago.

Letter to Atlantic Chapter of MSSC

Chris has put together a well-researched open letter to the head of the Atlantic chapter of the MS Society of Canada: http://goo.gl/5VZRU.  While I don't go out of my way to put down the MSSC, such as when they mention that they are going to do a "Walk for MS", when they do ask my opinion I do let them know that a) the MSSC has a very high proportion of administrative costs, b) that the MSSC has gone out of its way to be obstructive to the study of CCSVI treatement and c) that a good proportion of its money comes from drug companies and d) much of their non-administrative money goes towards testing drugs from these companies.