Secondary Progressive MS for 30 years. Will marijuana help?

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Secondary Progressive MS for 30 years. Will marijuana help?

Postby millie846 » Mon Aug 19, 2013 1:06 pm

I've had MS for over 30 years, secondary progressive. I have function of just my left arm. I live at home with caregivers 24/7. I don't want to discuss the legalities of medical marijuana, I would just like to hear some opinions and experiences of people who have used it to treat their symptoms and if it helped? I have a baclofen pump and I am on Rebif. I still get pretty severe spasms in my legs and have a low mood most of the time. I have trouble sleeping through the night even with sleep aids. I know marijuana is safe, much more than most prescription drugs, but I'd like to hear some of your experiences with it and if it has helped you manage ... Thank you in advance.
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Re: Secondary Progressive MS for 30 years. Will marijuana he

Postby HarryZ » Mon Aug 19, 2013 2:24 pm

millie846 wrote:I've had MS for over 30 years, secondary progressive. I have function of just my left arm. I live at home with caregivers 24/7. I don't want to discuss the legalities of medical marijuana, I would just like to hear some opinions and experiences of people who have used it to treat their symptoms and if it helped? I have a baclofen pump and I am on Rebif. I still get pretty severe spasms in my legs and have a low mood most of the time. I have trouble sleeping through the night even with sleep aids. I know marijuana is safe, much more than most prescription drugs, but I'd like to hear some of your experiences with it and if it has helped you manage ... Thank you in advance.


My wife (passed away in 2007) had MS for over 35 years and it eventually turned to Progressive. At one point, she used Sativex (rx MJ spray taken under the tongue)for her spasms. It did work, the spasms reduced significantly and she she stopped using the Sativex.

She could have participated in a medical MJ trial here but chose not to due some of the cumbersome logistics of the trial. The neuro conducting the trial said that they knew MJ worked on MS patients and often resulted in far fewer side effects.

I see that you are on Rebif. I'm not sure why at this point because there is no MS medication that has been proven to work on secondary progressive MS. And since you are using a baclofen pump, I would ensure that you are under some kind of medical supervision if you plan to use MJ. Not sure where you live and if this is possible but I would certainly want to know how MJ and baclofen combined would work. You need to get to the right neuro on this but it's certainly worth a try.

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Re: Secondary Progressive MS for 30 years. Will marijuana he

Postby questor » Mon Aug 19, 2013 3:01 pm

millie846 wrote:I've had MS for over 30 years, secondary progressive. I have function of just my left arm. I live at home with caregivers 24/7. I don't want to discuss the legalities of medical marijuana, I would just like to hear some opinions and experiences of people who have used it to treat their symptoms and if it helped? I have a baclofen pump and I am on Rebif. I still get pretty severe spasms in my legs and have a low mood most of the time. I have trouble sleeping through the night even with sleep aids. I know marijuana is safe, much more than most prescription drugs, but I'd like to hear some of your experiences with it and if it has helped you manage ... Thank you in advance.

Millie,
I use a vaporizer with medicinal MJ before going to bed each night. It has helped to reduce soft tissue muscle spasms in my urinary tract so that I sleep better, but the problem is finding the right mix of sativa (THCs) and indica (CBDs) strains to get the benefit I'm looking for. When the dispensary runs out of the strains I've been using, I have to experiment again to find the right mix. I've also had MS for over 30 years and am secondary progressive. I am still ambulatory. My worst symptoms have to do with cognition/memory, bladder issues, poor equilibrium, and fatigue/staimna. I have a host of other symptoms that trouble me, but that don't make the "worst" list.

Good luck.

HarryZ wrote:I see that you are on Rebif. I'm not sure why at this point because there is no MS medication that has been proven to work on secondary progressive MS.

Harry,
I had a discussion about this with a doctor at the Stanford Neurology Clinic regarding Copaxone, which I have been using for about 15 years now, I was classed as secondary progressive 13 years ago. The doctor said this issue comes up often especially from people who have difficulty with injections or side-effects. The doctor agreed that the DMDs have not been given formal FDA approval for secondary progressive MS, but after having the experience of stopping a fairly stable secondary progressive patient from Copaxone who soon after ended up in the hospital with a severe relapse, the doc didn't suggest that I discontinue Copaxone as long as I tolerate it well.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone and Ampyra user
Botox Bladder Injections
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Re: Secondary Progressive MS for 30 years. Will marijuana he

Postby millie846 » Mon Aug 19, 2013 4:13 pm

Thank you both very much, I hope I am replying correctly I am new here. I am on Rebif because my neurologist said even though it is for relapse remitting, it is better to be on something than nothing at all? Not sure how this is true.... I have no side effects from the Rebif so I keep on it, I also see no benefit from it either.. I don't know what to do, I've tried bee stings, alternative routes, every medication out there but nothing helps.. I just want some quality of life, not a miracle..
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Re: Secondary Progressive MS for 30 years. Will marijuana he

Postby HarryZ » Mon Aug 19, 2013 6:02 pm

I am on Rebif because my neurologist said even though it is for relapse remitting, it is better to be on something than nothing at all? Not sure how this is true.


Hmmm...this can be a very debatable comment in MS circles. To take a drug because it is better to be on something rather than nothing is NOT the reason for taking these powerful immune suppressive medications. I won't go beyond that but I bet there will be a few other comments from other readers.

Harry
Last edited by HarryZ on Tue Aug 20, 2013 5:45 am, edited 1 time in total.
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Re: Secondary Progressive MS for 30 years. Will marijuana he

Postby PointsNorth » Mon Aug 19, 2013 8:53 pm

Albany 2010. Brooklyn 2011
Calcitriol+D3 2013-
Hurry up and wait.
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Re: Secondary Progressive MS for 30 years. Will marijuana he

Postby centenarian100 » Wed Aug 21, 2013 10:34 am

Thanks for the info to those who posted their experiences
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Re: Secondary Progressive MS for 30 years. Will marijuana he

Postby elyse_peace » Wed Aug 21, 2013 2:15 pm

hi millie,
welcome. i also have had ms for over 30 years. i have never been on medication.
i want to tell you that a friend who had been using avonex, satisfactorily, for many years, was urged to change to rebif by a new doctor. she resisted but she switched.
she ended up losing her law practice and home and moving to assisted living.
i don't know how one can be careful about changing things, but i'd suggest that if rebif has been working for you, maybe you shouldn't rock the boat.
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