Thursday, January 19, 2017

New Year New Treatments

The start of the new year has me trying two new treatments.  

The first is medical marijuana which is prescribed for muscle spasms, stiffness, and for pain (though this is not one of my complaints).  I have just started taking it so am not sure how it is working.  It is only available on a private prescription and it is not cheap.  I think that I would be better off financially if I bought a bag of the real stuff.  At least I would get stoned out of the expense.

The above is only a treatment for symptoms but there is also the hope that it might have a positive effect on the nervous system and its ability to repair itself.  There is at least one trial being run with this as the experiment.  I figured it was worth a try for either reason.

The other treatment is similar to the one that I started this blog with in that it is an immune system suppressor that is less toxic, and therefore better tolerated, than the Lemtrada which was decidedly NOT well tolerated two years ago.   This one is injected over three days, and then again a month later,  and then again in a year.  There are a fair number of potentially scary side effects but there are not a lot of other alternatives for my disease so here we go again!

My treatment started with some screening blood tests and then yesterday an MRI and a Lumbar Puncture to document my baseline.  I also got the first injection yesterday, the second today, and the third will be tomorrow.   The bad news is that this treatment is only offered at the Royal London Hospital which is all the way into the City of London.  Hour and a half each way with normal traffic, two or more with rush hour traffic.  Painful.

Lastly, and not exactly a treatment, but I have finally completed the application process for Dignitas in case all of this fighting MS does not work.   It has been a bit of a grueling process to assemble all the documentation that is required but finally we got there.   Getting doctors reports that included a prognosis that would support an end of life decision was decidedly difficult.  My doctors would tell me that they would support me but I never felt like their hearts were in the game.

Note to the religious right.  I get the whole sanctity of life thing.  If you want to protect yours feel free.  Leave me to deal with mine though.  It is my bleeding life!