Alternative ways to manage symptoms??

[TraceyMember]

Does anyone use cannabis as a means to help them manage MS symptoms? Just curious since its come up as a topic of interest several times with friends. Or what mechanisms do others use to help them manage more chronic issues beyond the DMT’s suggested by our doctors??

[F.U.MSContributor]

Hey Tracey. Can’t say I’ve used cannabis to manage MS symptoms. I’ve heard it works for a lot of people. I guess MS has never become chronic enough for me to go beyond taking my Rebif and leading a healthy life style.

Aaron

[LelainiaContributor]

I saw a pain specialist for 2 1/2 years. I had biweekly freezing shots in my base of my skull and bottom of my foot to deal with an irretractable migraine and a tendon issue in my foot. It was as painful as it sounds, but I didn’t really have a choice. My best friend is a massage therapist so she also helps me cope. I’ve been on some pretty heavy duty drugs as well.

At one point, my pain specialist suggested cannabis, but if someone has smoked it and walks by me on the street, I immediately can’t breathe-I’m allergic to the smell and no telling what it would do if I actually used it. (I’m extremely drug sensitive.) O decided it wouldn’t be wise for me to go that route.

I do know a couple people with MS who use it. There’s a place called “The compassion club” here in BC that is a legal distributor of medical marijuana. You have to get a doctor’s form to use the despensery and I don’t believe it’s covered by our pharmacare system. They seemed to find it helpful.

[TraceyMember]

I am managing OK without going down this road as of yet. From other chats–I am more interested in nutrition than anything at the moment. I do get more headaches and have some minor eye stuff going on and my neuro is suggesting I take prescribed medications (beyond my DMT’s) for these things but has said that he doesn’t believe the more frequent headaches are part of MS. He says that pain in general isn’t part of the disease and that I have a history of headaches (which I DO NOT–only during the last 2 relapses has this become an prevalent issue). I am the sort who is refusing the prescription meds for the present (I will reconsider in the future). Its a snowball effect of sorts for me when it comes to taking any drug—and overwhelming. Part of the refusal for prescription meds stems from the disconnect I seem to have with my neurologist in terms of my care (his approach to addressing my questions). Several friends have asked if I would consider this as an alternative to other pain medications and I was curious if anyone had gone down this pathway. I am not interested in smoking anything…..but I know there are other ways of consumption. I figured I would see how others have considered this topic as they progress through all this stuff. I think I would rather do this occasionally for relief over taking 2-3 added prescribed medications (on top of my DMT drug) on a daily basis—but this is more of a thought at this point than an action. There may be a point when I need to take the prescription meds and I will re-evaluate this decision at that point.

I have invested more funds into being healthy (food, yoga etc.), an osteopath and massage therapy over any form of “medication” at this point but I want to remain open to other alternative methods of self-care as time passes. Thanks for the insights!

[F.U.MSContributor]

I know a few people who use the Compassion Center here in Toronto as well. One for MS, the other for something else. They both benefit from it and I would probably give it a try if nothing was working for me. I also heard that you don’t have to smoke it. They can supply you with “pot cookies”. It sounds so non-medical but I would rather give that a try before I tried the freezing shots in the base of the skull you were talking about. That sounds very uncomfortable. I think a lot of people look very negatively at people who use marijuana for pain as well. I think that is awful. If something is going to take someone’s pain away and make them feel good, then it’s good. I’m sorry to hear about your discomfort. I hope you figure things out sooner rather then later. Pain is the worst.

[LelainiaContributor]

Yes, there are TONS of ways to injest medical marijauna-I believe the compassion club bakes alot of it in different things. From what the people I know who use it were saying there’s a whole menu you can choose from.

The freezing shots in the base of my skull stung more than anything, but I have a high pain tolerance and given the excruciating nature of my migraines, it was the lesser of two evils. After awhile, I think my brain normalized the injections-I had them every 2 weeks for 2 1/2 years.

In my case I’ve seen the top neurosurgeon in BC and he thinks the migraines are a combination of my having had aspetic meningitis from having rare side effects from IVIG and also the extensive damage to the top of my spinal cord. (I don’t have brain lesions, knock wood.) I personally also think it’s affected by the DMDs as well. I have crushing migraines pretty much non-stop.

I hope you can find something that works for you Tracy. It’s no fun to be in chronic pain and I really think getting a referral to a pain specialist is a smart thing to do. In alot of cases, they can’t make the pain go away, but they can work with you to manage it. I think the most important thing they do is validate the fact that you really are in pain and it’s not just all in your head. Lots of doctors maintain that MS is not a disease that causes pain, but that’s not even close to being true.

[prisoneroftodayMember]

I have tried cannabis for pain relief. I’ve never tried eating it, but I’ve come across a few people that use it and find it extremely effective (some smoke it, others use various recipes). If you’re going to go this route, I strongly suggest easing into it.

For me, it was not very effective. The first time I tried it for pain relief, it made me incredibly sick. The room would not stop spinning, I couldn’t stop shaking, etc. and it did not do a whole lot of pain relief (I was having a TN attack at the time and wasn’t on a prescription medication for it yet). I just used too much that first time and regretted it. After I started taking tegretol and I started building a tolerance to that, during a severe attack I would sometimes use a little bit of cannabis to dull the pain a little bit so I could get to sleep. I’ve switched to gabapentin though and that controls all my pain so I don’t see the need to try cannabis again.

[TraceyMember]

Lelainia, it sounds like you’ve been through so much with your MS. All the pain treatments etc. I don’t think I am at this point as of yet—-its annoying and makes me tired but I can function for the day. I asked my neurologist to do an MRI scan of my upper back to understand what is going on in my spine (its the only part of my spinal cord/brain that hasn’t been scanned). He doesn’t feel that this is important because it doesn’t change his treatment plan for me. I disagree–I would like to know the lesion load on my upper spine so that it can be monitored over the long term. If he doesn’t agree pain is part of MS–I doubt he’ll refer me to a pain specialist. Since I am not on the meds for pain as of yet that he wants to prescribe it will be a difficult request. I am a terrible patient in the fact that I am trying to stay off as many medications as possible and only taking the DMT’s. I think the headache issues are in part due to the eye tremor/eye pain and the fact that I am reading lots at the moment—I hope that some of this will go away after this last exam is completed (hopefully in the next 2-3 weeks). Last time it was bad for 2 months—I am reaching this point this time around–

I want to explore my options for management of the headaches and I thought that this would be a subject that people avoid (similar to what Aaron said about the perception people have of cannabis use) and should discuss in a forum of this sort. I am glad others have shared their experience—

[AndreaSContributor]

I wouldn’t say your a bad patient! DMT’s are the only thing that will help you in the long run and change the disease course. The other medications are for symptoms and at times it’s best if you can get through the day without them. Then you don’t run the side effect risk! You’re probably right about the headaches. They could be MS, they could be working to hard, eye strain and that big one…STRESS. It’s unfortunate though that you don’t have a doctor who is supportive and can get to the bottom of the cause. If you can’t get to an MS center maybe you can at least get a neurologist who focuses or specialises in MS. When I’m in Canada even though I’m near a big city and could go to an MS clinic I never have as my neurologist is a MS specialist and I feel very confident in the care I get (she doesn’t tell me headaches aren’t an MS symptom). Headaches are common if you have damage at the top of your spinal cord in your neck (where most of my recent damage is. I hope you can find something that works, and figure out what the cause is!

[LelainiaContributor]

I’m not a fan of taking meds either. In fact I have done my best to minimize the amount of medication I am on. Alot of what’s been perscribed for me either caused major serious side effects or was of no use to me at all. Like everything else about MS, it’s completely individual and unpredictable.

It’s worrysome that your neuro doesn’t want to have a look at your spinal cord. What’s happening there will be very crucial to alot of your motor function. I hope that if he’s not willing to address your concerns and help you get the answers you want and need, that you’ll be able to get a referral for a second opinion. I do think he’d want at least a baseline on your spinal cord to use to determine if your DMD is working or not…

[TraceyMember]

Hey Andrea and Lelainia: My current neurologist says that the DMT is working on my brain (Yay) which is super positive (~50% reduction in lesion load) and he doesn’t care about what is going on in my spine because it will not change his treatment plan for me regardless of what is happening. I would like a baseline of the upper spine for future scans and knowledge—perhaps this is an unreasonable request but I don’t think so. My science-minded brain doesn’t like the neuro’s answer so far….

My neuro and I don’t have the same approach to my healthcare. He’s more autocratic–unilateral decision based approach (He wants tell me what to do and I am supposed to sit there and silently listen and then leave fast) whereas I want to be actively involved in my healthcare (hence lots of questions–he hates my questions). The reason I was diagnosed early in my disease is because I was proactive and I have a great GP who supports the use of 2nd opinions. I plan to try and see my diagnosing neurologist again because he said I could come back anytime and he’d be willing to discuss current research and answer questions with me at any time (he’s not part of the MS clinic thus the transfer to a new neuro once I was diagnosed)–Besides the eye issues I am doing well (I am getting used to the discomfort) but I would like to see a health care professional that I am more comfortable with—this has added way more stress to my life than I need right now but I am focusing on the solution at the moment–not the issue. And I will be a bad patient–refusing extra meds as long as I can manage.

I hope you are both doing well–I’ve been keeping up on reading the other posts–even if I don’t write. Andrea–I hope the new treatment you are trying is helping with things. Did either of you see the nature of things (CBC) last week–they had a show on MS and the CCSV treatments—it was interesting.

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