Well, another doctor seems to be determined to cripple me.
I “divorced” my last neurologist because he was DETERMINED to take me off the medicine that has controlled my MS for the last 19 years, Dronabinol (Marinol) because it was “off label” for MS. Instead he put me on Gilenya (which costs $72,000 a year), which I took myself off of because, for the first time of my life, I started to lose control of my bowels. Well, he referred me to another neurologist but I can’t see him until October, AND he absolutely refused to give me a new prescription for the Dronabinol leaving me with no effective way to control my MS once my pills run out, which will happen in a week or so.
So I went to my primary care physician hoping he would give me a prescription for enough Dronabinol to last until my appointment with my new neurologist, and he said he would look into it. My old neurologists office has REFUSED to send my primary care doctor any of my records, and because of this today I got word from my primary care doctor that he won’t even give me a temporary prescription to tide me over until my appointment with the new neurologist.
I am SO DISCOURAGED! I’ve cut down my already inadequate dose of the Dronabinol trying to make it last but I am getting perilously close to where I WILL have an MS attack after 15 years or so of not having an attack. How do I know this? I’ve been through this before, with the Dronabinol cut off and me getting an attack when the amount I took got too low to control my immune system.
Unfortunately for me my next door neighbor is a policeman, so I cannot risk going the illegal route, not that I could afford it anyway.
So I am facing becoming crippled again. I dug out my wheeled walker, which I have not had to use for over a decade. If I become unable to walk I could get an electric wheelchair from Medicare, but I got myself out of the wheelchair 19 years ago and I DON’T WANT TO GO BACK TO USING ONE.
But the modern medical field seems determined to cripple me because the only drug that works on making my MS better is off label for MS, while the doctors cheerfully prescribe me other drugs off label and are quite willing to put me on opiates for pain, even though the opiates and 1) addictive and 2) lethal if too much is taken by accident (my memory is not the best).
But I seemed to be doomed. The doctors are quite willing to prescribe me drugs for Rheumatoid Arthritis though I’ve never had RA, or prescribe me a chemotherapy drug though I do not have and never had cancer, or try me on several other drugs with horrible side effects that are off-label for MS.
How will I be able to get up on a horse if I can’t even stand up? The handicapped riding program nearest to me would only let me ride once a week (and I need at least two rides a week so I can walk securely with just two canes), and reserves the summer time for children, and summer is the time that I REALLY need to ride horses to keep walking.
I am heartbroken. I have worked so hard ever since 1993, when I was diagnosed, to keep myself out of the wheelchairs, to keep walking, to keep riding horses, and not end up bed bound, but now the doctors seem determined to cripple me for life.
Thank you all for reading this. I know you all can’t do much to help me, but I just had to get this off my chest. I would break down crying, but when I break down crying it tends to rapidly, as in immediately, cause an MS exacerbation, the last thing I need right now.
If only I could find a doctor willing to help me, but right now I am losing all hope of finding one that wants to keep me walking instead of crippling me worse than I am already.
