Medical cannabis

Anyone tried it for HSP?

Tim from NSW writes:

I have tried to obtain medicinal cannabis from northern NSW. I believe it would be of assistance with my muscular problems. Unfortunately the state government seems to have closed that down. Does anyone else use and where did they get it from?


  1. I have used marijuana. I have neuropathy on the bottoms of my feet, pins and needles feeling, sharp. It takes the feeling away, makes me feel better when it gets worse. I don`t do it all the time. I have used medical marijuana though. It`s better than taking pills, Baclofen, worrying if you can take a pee later on in life without a catheter. My older brother was taking Baclofen, I think his doctor prescribed too much for him, my opinion, because he ended up staying in bed, and passed away in March 2013.

  2. Question for you Donald – do you have a confirmed diagnosis of HSP from a neurologist? Do you have spasticity and did you try Baclofen for it at some point? what was the effect of the marijuana on the spasticity?
    thank you.

  3. Editor’s Note: This comment was posted to another article, but is relevant to this topic and so has been posted here as well.

    Ruud 5 June 2015
    I have tried baclofen but it had no effect on me (only that it make depressive and angry).
    But I don’t hear about the positive effects of cannabis. Because I am living in Holland, there is no problem to get a legal prescription for this. I smoke 4 times a day a cigarette with 0.2 grams of Bediol. This helps me to stay mobile and it reduces the pain I would have because it reduces the spastic movements of my legs. I am happy to share more information if people are interested.

  4. Diagnosed in 2004, has come a long way since, no cure or much advice back then, told that marijuana no good as it is a stimulant not depressant and thought it gave me more spasms and cramps at night if I had a puff, but there is a lot to be said about mind over matter, and if you think or told something is bad, you will think and feel it is no good, so go with what works for you and thank god I have mild form and I have been taking a natural drug called Crampeze every night for 10 years and I swear by it to stop spasms and cramps but I think I am so convinced it works it is a habit now. First diagnosed and told to take Baclofen if I want to walk normal then and there, but I chose not to and I manage my hsp as I see fit for me that works as you should no what you can and cannot do. Good luck with your disorder and manage it as you see fit for your body. Understanding it means a lot now as when I was diagnosed no one knew nothing.

  5. I have had HSP for about 10 years. I have used Cannabis before for fun and I know its effects very well. Having HSP I know what works for me and what doesn’t. If I have any foreign chemical in my system It effects me hsp directly. I would get stiffness in my legs and it would effect my walking Gait. I don’t believe Cannabis can reduce Spasicity or give relief. It would make you feel as though It was helping you but that is the drug playing with your mind. Cannabis only leads to destructive Addiction.

  6. Some extra information about using cannabis as treatment for spasms. The last 4 months I have been using cannabis with a very low THC level (0,4%) and a high CBD level (9%). This is in Holland and Canada – available as Bedrolite. This has all the benefits of normal cannabis but it does not play with your mind. It works for me even better than the version mentioned in a previous comment. If I should get cannabis in a regular coffee shop in Holland the THC level is around 22%. This is the problem why you should not use this. The next step will be CBD oil (no smoking anymore) but at this point it is not available (medical) in the Netherlands. Don’t expect miracles but since I have been using this I don’t need painkillers and have almost no spasms.

  7. Things have come a long way since I was diagnosed 12 years ago and very interesting to hear other peoples comments, especially on cannabis. Ruud with his story on CBD oil sounds like a better option than smoking THC cannabis all the time and I know cannabis affects me, sometimes drinking at the same time and I can not walk after as my legs stop functioning but I know I am not blind but being carried out is not a good look. Wondering if cigarettes are really bad and have indulged in cannabis, drinking but no real hard drugs anymore, wondering if this affects my hsp any more than it would normally, but what is normal, cannot bring myself to be a teatotaller.

  8. I have had HSP for just under 10 years. The Dr’s didn’t know what is wrong with me. The Dr’s don’t know how long it will take before I’m in a wheelchair. I tried Baclofen but it seemed like it didn’t do anything. Just wondering if anyone has tried anything other than what the Dr’s have told them to take? Or any other options there are.

  9. I have bitten the bullet and ordered Canabis oil from a reputable, husband and wife supplier in Queensland. Strength 1000 mg. There is no THC only CBD SO HERE IS HOPING.

    5 drops a day. Everyone cross your fingers and everything else. I had to try something; gradually deteriorating; last Thursday and Friday pain was 100 out of 10.

    1. Tim, please keep us updated on your experience with Cannabis oil. I am working with some patients in Kiev, Ukraine who are anxious for a solution that works.

      I run a non-profit that shares accurate information on Cannabis, and HSP is one illness we don’t have much data on.

      I wish you success!

      1. I have hereditary spastic paraplegia Hsp7. I have had some good results with cupcakes with high quality cannabis and I’m also having monohydrate creatine.

        I have found good boots with firm soles really improves walking.

  10. I have had HSP symptoms since birth. For the last ten years, cannabis has helped me for stomach pain, but can’t get it regularly because it’s not legal here in Israel. I tried to get medical cannabis but didn’t get approved. I find that high THC level helps the most for me so it’s surprising to hear otherwise from other HSP people. I’m trying desperately to get medical cannabis approval and hope to hear if anyone else finds that high THC helps them too.

    1. I was diagnosed with HSP about 8 years ago. I tried Baclofen and was up to 9 pills a day. It just made me tired, I am taking Tizanidine with decent results. I live in Massachusetts and marijuana and CBD oil is legal. But I carry a firearm so I can not have Thc at all. I am wondering If CBD is working for anyone?

  11. Any updates? Would this be a viable option instead of the botox? My 4yr old son has spg4 mutation and botox doesn’t sit right with me.

  12. I have had hsp for 25 years. I just tried a edible cannabis last week. I was able to stand without losing my balance. I’m going to try it again. I’ll keep you posted.

  13. I have had HSP for at least 10 years. I take 3x25mg daily and have been using it for at least 8 years. my physio who works for MS society at Lidcombe NSW suggested sativex (liquid marijuana) it is supposed to be good for spasticity. Has any one tried it yet? If so where did they get it?

  14. Not cannabis related but I have been injecting Botox into my calfs and it has resulted in me walking much more freely

  15. I have heard of a cannabis liquid Epidiolex. they seem to think that it may be able to assist. it is available, I think you can get it from your chemist. does anybody know about it from what FDA ok?

  16. Went into Brisbane hospital 20 years ago and had tests as genes test was then 6k and available in USA and diagnosis was HSP have done the Baclofen , Lyrica & other associated drugs which have had affected bowel and bladder control and last year was encouraged to try hemp oil from Northern NSW at the rate of 9 drops per dose & increase by a drop until your body feels heavy then back off a drop after the 1st dose a persistent cramp in my left groin melted away after about 30-40 minutes and by the 4th night was able to get a full night sleep
    At the time was using Norspan 30 mg patch for pain and started getting itchy under patch and was also using a deep heat type rub on my left thigh which both broke out in a very nasty rash which was treated with antibiotics,I continued to use hemp oil until rash started to reappear & am of the opinion that the hemp oil didn’t agree with the linament and pain patch.
    At present I am in the process of having the genes test done now available in Australia and am trying to do the painful task of weaning myself off the pain patch as I want to retry the hemp oil thing in a desperate attempt to ease what is becoming a painful existence with joint and hip pain and increasing muscle spasm in legs and shoulders and lower back pain , I find night time the hardest seems like unused muscles spasm harder
    PS am currently using a scooter and Canadian crutches outside and wheelchair and Canadian crutches inside to remain mobile ,but shoulders are starting to feel the strain of carrying body weight
    My best wishes to all HSPers out there try to find something you love doing to keep your mind off the pain associated with the ailment it helps with the pain if you can keep busy

  17. Hello. I got my genetic diagnosis for HSP spg7 10 years ago. I live in Canada. I had Botox shots in my legs every 3-4 months for approx 6 years and took Baclofen. The Botox definitely took care of my spasticity & therefore pain. I also take 10mg of baclofen at night and 5mg in the morning. I experimented with higher doses up to 30mg a day but that rendered my muscles and mind useless. 2 years ago I was in a car accident and my worst injury impacted my neck and shoulder muscles. Constant pain and stiffness. So after almost a year of weekly physical therapy and not getting much relief I tried medical cannabis oil. The strength I found best for me was 1 mg/ml & 20 mg/ml CBD which I take 7 ml twice a day and before bed I take another blend that has 5 mg/m of THC & 7mg/ml of CBD. Not only did it help with my neck/shoulder pain but it also takes care of the spasms in my legs so I no longer have Botox shots in my legs. What a wonderful discovery that was and saves me up to $10,000 a year which was the cost of my Botox injections. What I would like to emphasize is that what works for one person (especially dosage amounts) may not work for another. Like the CBD oil has worked wonders for me but I know others haven’t had the same results or smoking. So unfortunately like all medication it’s trial and error. I also do
    pilates that are tailored to my condition and I believe it has helped keep me mobile. I mostly use a walker for shorter distances and a scooter for longer treks on hard surfaces.

    1. Hello Beate. I live in Burlington, ON and would be interested in talking to you if you are agreeable. I’ve been experimenting with CBD oil and THC capsules but without much success. It looks like you were using much higher levels than I was. The most was 20 mg CBD plus 10 mg THC. I don’t have any pain just a bad gait, a dragging right leg, and poor balance. Botox didn’t do anything for me. I can give you my phone number if you are willing to chat.

    2. Hello Beate, very interested in your comments, not least because I have SPG7 and was diagnosed 12 years ago. I live in Australia. Am considering having botox injections soon and am apprehensive but hopeful that it will help relieve the stiffness. I don’t have spasms or pain and am not sure if the 20mg of Baclofen I take in the evenings is the reason as I have never had spasms, with or without. Have also considered CBD but it is difficult to obtain here. Stiffness in my lower legs is the greatest problem, and combined with muscle weakness means that I can’t walk without aid. I won’t take higher doses of Baclofen due to side effects I’ve experienced in the past. I exercise most days of the week, and like you I do a Pilates class weekly – very important for strength and suppleness. The exercises I do each week with an Exercise Physiologist has helped my muscle weakness – and self-confidence – significantly.

  18. Larry I have the same problem as you I was told 8 years ago I have h s p I would like to know what you take please .i have just ordered cbd capsules 6% thank Anita

  19. Question for the medical know-it-alls, please:

    If anyone ever comes up with a cure for HSP, what exactly would it do for those of us in particular who have never had the chance to walk—dare I say—normal?

    37 years, and struggling to get by with this neverending madness is taking its toll on me.‍♀️

    1. Editor’s Note: The word ‘cure’ implies correcting whatever is primarily causing the disease, which in the case of HSP is faulty genetics. So a cure means fixing those genetics e.g. gene therapy, which is still very largely experimental technology. Our HSP research program seeks an ‘effective treatment’ in the form of a drug medication to restore impaired cell functions to normal. What no one knows is the potential for rehabilitation of the muscles and bones associated with impaired mobility, even if the neurons can function well. However we are committed to finding out!

  20. Hi i was diagnosed with familial spastic paraparesis with peripheral neuropathy in 2002 aged 19.

    At first i had to use walking stick, lots of pain meds and baclofen…
    1 month after i started smoking cannabis i gave it all up…
    I totally reccomend anything with thc for pain and spasticity…
    It the only reason im still as mobile as i am…
    Jah bless

  21. Has anyone tried the Sativa spray or capsules.
    They say that the sativa will make you more energetic.
    Maybe it might help with the fatigue part of this disorder ❓

  22. I have a confirmed diagnosis of progressive hereditary spastic paraplegia and have really good results using cannabis.
    The best way is make cup cakes and only use really small amounts.
    I use 4gm of head mix with 12 cupcakes.
    I eat 1/8 of a cupcake per day in the morning.
    You don’t want to smoke it.
    It really improves your speaking and mobility and seems to improves circulation.
    Bottom line it must be head not leaf.
    I have tried baclofen and other muscle relaxers with negative results.


    1. David, greetings. I also have HSP, specifically SPG4. I would like more details about the amounts of cannabis. I see that you use 4 grams of head mix (sativa) to make 12 cupcakes. You have 1/8 cupcake a day, so a cupcake lasts 8 days. With 12 cupcakes, that’s 8 x 12 = 96 days, just over 3 months. Is that correct? What positive effects do you notice on – Rigidity? Balance? Mobility? Speech? Pain? I have tried muscle relaxants – taken baclofen, tizanidine and even sativex, to no avail. Can you confirm if you have to buy the 4 grams of sativa head in an authorized store? And are there places that sell cookies, butter, and cannabis oil? Thanks for any information. Josep.

  23. Have returned to forum to say that am in process of trying CBD in Australia
    On my last visit to neurologist I asked him the question & he said I qualified under laws regarding supply and have an order placed in Canada for a lower concentration oil but has not arrived yet
    My pain/spasms have increased markedly so am looking to try ASAP will post results

  24. Oil arrived a little expensive but thought I’d at least try it ($190 for 40ml)
    Just took my 2nd dose of 1ml of 25% cbd with coconut oil carrier & feeling a little more comfortable sitting still, has eased peripheral nerve numbness in feet & legs & eased muscle spasms in left thigh (resting) still aggressive when I move
    Am feeling a little apprehensive about sleep tonight am hoping for a little more. keep fingers crossed, will post results.

  25. Love reading about everyone’s experiences with this.
    My son now 5 years old has recently been diagnosed with HSP. It took 4 years to get a diagnosis.
    At this stage he currently gets botox once every 6 months. He wears AFO orthotics daily. We are located in Australia.
    I will keep checking out this page regularly love reading about everyone’s experiences.

  26. From what I know, CBD and THC don’t really work when not taken together. They both complement each other so I’m not suprised if those taking pure CBD don’t get much benefits. Both elements work together.

  27. I am in Canada & was diagnosed around 6 years ago. I’m currently taking Baclofen, gabapentin & also others for bladder urgency/hesitatancy.
    I get Botox in my legs every 12 weeks.
    My gait is nonexistent, I have NO balance & none of the treatments seem to do anything.
    I’ve been using CBD 50 oil for a while now to no effect. Recently spoke with the NP who is monitoring my Cannabis use and am now taking 2 ml of CBD 50 a day and a very small intro dose of THC in tandem. I will increase the thc amount every week. Hope something happens. I’m tired of not being able to move/walk normally. Tired of tripping, losing balance and falling.

  28. Before trying to find CBD oil or other cannabis products, would be worth to test first to smoke cannabis and see if it makes a difference? Or could smoking not have any effects, but possibly have good results with CBD or others?
    Thanks for any feedback!

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