NFC Multiple Sclerosis

[notams]

I can't be the only one. Never fun to talk about. But, might help to talk about it.

I'm dealing with Primary Progressive. Several years. Only meds are Ocrevus infusion, Baclofen, and cannabis.

I prefer microdosing dry herb vaping over every other method I've tried. I've never smoked - not once. Ever. No cigarettes or cannabis. My first ever experience with cannabis was September, 2017. After edibles, concentrates, sub-ohm, home-made edibles and tinctures I settled on dry herb vape as primary intake.

It's been a long strange trip and I've needed much help along the way. We really are on our own in using this medically. My white coat crew (doctors) are useless.

I think my super-expensive infusions do the heavy lifting. But, cannabis got my annual Rx expense from over $200,000 (insurance pays) to around $75,000. 15 pills a day to 1. My functionality / quality of life increased as well.

There's a lot of help in this community. Reach out. Get the info you need. Use whatever device you choose correctly, effectively, and pleasurably.

 

[Vitolo]

I can't be the only one. Never fun to talk about....

Wow.
I rely heavily on Vaporization, as my Godsend on a dozen areas of my present conditions.
It is always a blessing, no matter how many patients I hear it from, to know that others see the
Natural Cure ands the best delivery system to use.

 

[MSMPT69]

I can't be the only one. Never fun to talk about. But, might help to talk about it.

I'm dealing with Primary Progressive. Several years. Only meds are Ocrevus infusion, Baclofen, and cannabis.

I prefer microdosing dry herb vaping over every other method I've tried. I've never smoked - not once. Ever. No cigarettes or cannabis. My first ever experience with cannabis was September, 2017. After edibles, concentrates, sub-ohm, home-made edibles and tinctures I settled on dry herb vape as primary intake.

It's been a long strange trip and I've needed much help along the way. We really are on our own in using this medically. My white coat crew (doctors) are useless.

I think my super-expensive infusions do the heavy lifting. But, cannabis got my annual Rx expense from over $200,000 (insurance pays) to around $75,000. 15 pills a day to 1. My functionality / quality of life increased as well.

There's a lot of help in this community. Reach out. Get the info you need. Use whatever device you choose correctly, effectively, and pleasurably.

No you're not the only one. I have got relapsing remitting, diagnosed for just over a year. I am also on Ocrevus but vape daily to manage symptoms. I mainly use flower bur also hash and concentrates, both BHO and rosin. I have also found tinctures very useful and often micro dose with tinctures to get me through the day.
Also got my 85 year old father in law to use cannabis to manage his pain and using tincture and edibles he now uses no opiated medicines at all, just weed.

 

[jerri]

No you're not the only one. I have got relapsing remitting, diagnosed for just over a year. I am also on Ocrevus but vape daily to manage symptoms. I mainly use flower bur also hash and concentrates, both BHO and rosin. I have also found tinctures very useful and often micro dose with tinctures to get me through the day.
Also got my 85 year old father in law to use cannabis to manage his pain and using tincture and edibles he now uses no opiated medicines at all, just weed.

Thats the best news of the day Good for your father inlaw without weed Oxycodine was my only way not now just vaping WEED

 

[notams]

No you're not the only one. I have got relapsing remitting, diagnosed for just over a year. I am also on Ocrevus but vape daily to manage symptoms. I mainly use flower bur also hash and concentrates, both BHO and rosin. I have also found tinctures very useful and often micro dose with tinctures to get me through the day.
Also got my 85 year old father in law to use cannabis to manage his pain and using tincture and edibles he now uses no opiated medicines at all, just weed.

Nice to meet you.

 

[MSMPT69]

Nice to meet you.

Nice to meet you too. I simply cannot believe the costs of medications in the USA(?) and really feel for people who have conditions like MS. We are shielded from all of this in the UK due to the NHS.

 

[Abysmal Vapor]

@MSMPT Hey man ! I got a friend dealing with this and it is insane how the same meds cost 3 times more one month compared to the other.. like it is some sort of virtual currency.. and there is always shortage on meds.People are splitting doses and trying to do with less meds and at the same time prohibition fucks them over leaving them without their only salvation ... It is good to hear your government has done something to shield those guys from this..
People are generally unware and have little compassion for that disease here...It will be very often when we do walks and he gets an episode where he looses control over his body and everybody starts to think and act like he is some junkey that is having an OD on the street,ready to step on him and continue to their path . Shits like that make me wanna stepp off the planet..

 

[notams]

I don't think any of us here are interested in giving any medical advice. I'm not looking for to run foul of any forum rules either. However, good ol' fashioned stoner advice is appreciated. Or advice from an MS veteran.

I use cannabis daily (dry herb vape) and rarely have headaches. When I have a particularly bad day (spasticity) and use a vape pen with 80% plus THC concentrate I get a headache. The spasticity fades but, head hurts.

Any idea if this (headache with concentrates) is related? If so, remedies?

Edit: btw I'm in Colorado, USA

 

[MSMPT69]

I don't think any of us here are interested in giving any medical advice. I'm not looking for to run foul of any forum rules either. However, good ol' fashioned stoner advice is appreciated. Or advice from an MS veteran.

I use cannabis daily (dry herb vape) and rarely have headaches. When I have a particularly bad day (spasticity) and use a vape pen with 80% plus THC concentrate I get a headache. The spasticity fades but, head hurts.

Any idea if this (headache with concentrates) is related? If so, remedies?

Edit: btw I'm in Colorado, USA

I would try a tincture if I was you. I think possibly the concentration of the THC triggers a headache. Are you in a legal state? If so then look for a full spectrum tincture and try that. If not legal then you will need to make your own. I make mine using Magical Butter Machine and grain alcohol.

 

[notams]

I would try a tincture if I was you. I think possibly the concentration of the THC triggers a headache. Are you in a legal state? If so then look for a full spectrum tincture and try that. If not legal then you will need to make your own. I make mine using Magical Butter Machine and grain alcohol.

Thanks!
Great idea. I totally forgot about tinctures. I made my own. Results:

First one - was like pure ethanol. Burnt like hell. Putting it under the tongue was... Oddly the pain was so intense, but instantly fading, kinda enjoyed it... Well, fail.

Second - used a simple syrup solution to make it easier to use. Results were a sticky, goopy, nightmare. Fail.

Third - added pure mint extract. Yeah, I know, I'm an idiot. Did NOT help with the whole "hurts under the tongue thing". Fail.

Fourth - flung my equipment across the room.

However, that was 2 years ago with decarboxylation, mason jar heat baths, magetic stir plates, syringes, yada-yada-yada.

I think I will take your advice on tinctures. However, this time a trip to my medical dispensary and a professionally made product.

Thanks again.

 

[1nd3cEnt]

Cannabis and Multiple Sclerosis (MS) Treatment | Leafly

• Pain and sleep disturbances: According to a 2005 ”gold-standard” trial of whole-plant cannabis-based extract (oromucosal spray containing 1:1 THC:CBD), cannabis-based medication was twice as effective as placebo to treat pain, and three times more effective for sleep.
• Inflammatory-related issues: Neural tissue inflammation is common as the body’s immune cells attack the central nervous system. The (well established) anti-inflammatory effects of cannabis can help MS sufferers.
• Muscle spasms: A 2014 systematic review provided high-quality evidence that cannabis-based medicines were highly effective in treating muscle spasms.
• Abdominal complaints: Many scientists believe cannabinoids help control gut response and modulate gastrointestinal issues. According to a survey conducted by Scottish researcher Roger Pertwee, 51-60% of respondents reported a decrease in defecation urgency, a 44% decrease in incontinence, and 30% had less constipation.
• Mood issues: Most MS patients will experience depression or at least persistent mood issues. Pertwee’s survey found that more than 90% of the MS sufferers reported botanical cannabis as improving mood.

 

[notams]

Do you think MS can damage CB1 & CB2 recepctors?

 

[1nd3cEnt]

Do you think MS can damage CB1 & CB2 recepctors?

CB1 receptors are associated mainly with the brain & the CNS, whereas the CB2 receptors are mainly associated with the immune system. The CB1/2 receptors themselves are closely related proteins that are widely distributed on central & peripheral neurons. As part of the ECS, the role of these receptors is to monitor & modulate the response of neurotransmitters.

Because MS is an auto-immune disease that targets the protective myelin sheath of neurons & thus disrupts the signalling role of neurons, one could assume that the ECS, or parts thereof, might be negatively effected by MS in some fashion.

 

[MSMPT69]

Thanks!
Great idea. I totally forgot about tinctures. I made my own. Results:

First one - was like pure ethanol. Burnt like hell. Putting it under the tongue was... Oddly the pain was so intense, but instantly fading, kinda enjoyed it... Well, fail.

Second - used a simple syrup solution to make it easier to use. Results were a sticky, goopy, nightmare. Fail.

Third - added pure mint extract. Yeah, I know, I'm an idiot. Did NOT help with the whole "hurts under the tongue thing". Fail.

Fourth - flung my equipment across the room.

However, that was 2 years ago with decarboxylation, mason jar heat baths, magetic stir plates, syringes, yada-yada-yada.

I think I will take your advice on tinctures. However, this time a trip to my medical dispensary and a professionally made product.

Thanks again.

Ha ha....the first tinctures I made burnt your mouth out with grain alcohol!! Now I make them using grain alcohol for the extraction but also add Glycerin and after I have "cooked" it in the magical butter machine I then evaporate off all of the alcohol so you are just left with a very potent tincture with a Glycerin base.

 

[notams]

@1nd3cEnt Thank you. I've read several medical journal, and articles regarding clinical trials of MS & cannabis. But, I cant seem to find info on THIS particular subject (damaged receptors lowering efficacy). Your explanation is exactly what I'm thinking: there's no way MS can't screw up one's ECS.

Reason I'm interested in this: I have PPMS (progressive form without flare ups, just slow general decline). Either my tolerance is getting way too high, or it's just not working as well as in the past.

I started using cannabis in 2018. My tolerance is that of 3 elephants, even with periodic THC breaks.

I achieve moderate success with the physical symptoms (I can walk). But, hardly ever feel anything close to "euphoria".

Whaddaya think? If you have MS, do you get high? I don't. And it sucks. I'd like to.

 

[1nd3cEnt]

First off, I greatly admire your courage in speaking up about MS & its horrific depredations & the positive potential of cannabis in controlling MS pathology. I firmly believe that the medical benefits of cannabis will eventually break through the prejudice, negative labeling, & ignorance that cannabis uses must still contend with every day.

Your question about the CB1/2 receptors is very tough to answer definitively mainly bc researchers are still in preliminary research stages. Only now are we really witnessing the fruits of applied research with the arrival of cannabis anti-emetics, anti-inflammatories, etc.

Recall that the ECS/Endocannabinoid System (Endocannabinoid = endogenous/internal cannabinoid) consists of roughly 3 parts:

1. the receptors (CBR), like CB 1/2 & the GPR & TRP receptor series,
2. the endocannabinoids, like anandamide & 2-AG, & the enzymes that create & destroy these & other endocannabinoids,
3. the neurons, their pathways, & all other cells that group or integrate parts 1 & 2.

My sense about the CB1/2 receptors themselves is that they are very robust & resilient as protein bundles situated in cell membranes. As such, I doubt that they themselves are subject to MS pathology. Nonetheless, we should assume as open-minded & thoughtful researchers that any neuron or nerve in our CNS & body will be exposed to the pathological demyelination issues of MS, until the research concludes otherwise!

There are now many cannabinoids in very specific, single-cannabinoid purified forms that are appearing in our commercial spaces that you might be able to take advantage of in your fight against MS & its symptoms. For example, CBD, CBG, CBN, D8-THC, D9-THCV, D10-THC in addition to the well-known but often disparaged potent analgesic, D9-THC, are now mostly online & accessible to the informed consumer.

 

[notams]

@1nd3cEnt hey, I just NOW got your name. However, you are a decent fellow.

Thank you so much for your response. I processed it all day and did my research on my market, the robust legal medical market in Colorado, for specific cannabinoids. Interesting.

Small rant (you can ignore this, as my wife does)

None of my doctors (I have 4: neuro, DO, pain, psych) them ever, and I do mean EVER, ask about my diet. You'd figure this would be a large part of their evaluation of my overall health. Yet, the subject is silent if not for my introduction of it. I believe we dig our graves with our teeth. If my "specialists" have no interest in something as profoundly infuential on my overall health and well-being as my diet then I can hardly expect them to be concerned about something as mundane as my enjoyment, not just relief, from cannabis.

No one makes money if I'm healthy. And no one makes money from a sickie if he gets better from food, 'cept maybe the farner, but he always gets screwed.

I feel we (the medical users) are far too easy on the medical system. I adamantly refuse to call a bunch of assholes in white coats the "healthcare" system. They've done nothing for me, my family, or my loved ones to care for our health. They are simply high paid players in the higher education industry, the insurance industry, and the pharmaceutical industry. Unfortunately, society has appointed those assholes the gatekeepers to many of the things society should not have gates for, namely cannabis.

How pissed off would white rich women be if every time they had a headache they needed to smoke ibufropfen? What if ibufropfen were only available in a form that requires combustion? Or, you could vape ibufropfen but, your doctor is as informed about vaping ibufropfen as he is about cannabis and you're left to figure that shit out on your own. How long would it take the Karens of this world to demand cheap, OTC, pill form ibuprofen?

Yet, we allow them, the gatekeepers, to use the name "healthcare system". Not me. I respect individual people I have met in my dealings with the health industry. If this "system" cared for health it would have not grown into what it is today right alongside the criminalization of cannabis. That criminazation has delayed medical progress of this plant for over 80 years. Why is there not more accountability of the medical community for their complicit silence during this ongoing drug war?

 

[macbill]

I hope this is good info. I just came across it and decided to post it.
Cannabis for Multiple Sclerosis

Studies and Information on Cannabis for Multiple Sclerosis

 

[C No Ego]

Here are two terms to describe how cannabis helps that condition
Depolarization induced suppression of inhibition of neurotransmitter release ( DSI )
Depolarization induced supression of Excitation of neurotransmitter release ( DSE )

the cannabinoids are the only neurotransmitters to travel in a retrograde fashion to provide a bio-feedback loop for intracellular space to idenitify with the extracellular matrix ( extracellular space) and make cellular adjustments ( Epoxides / fatty acid binding proteins) accordingly ...
phytocannabinoids from cannnabis plant species are such bio-mimickers of all that action potential , they serve the role of [providing lipids that form neurotransmitter messaging ... they are like supplemental neurotransmitters for our cells to keep out of control signaling ( Excitation) in check ETC....
any type of spasmotic out of control neurotransmitters can be reconfiged to serve pro homeostasis response instead of out of control , no direction lipid metabolism with no final end result in sight ... balancing the flow of the neurotransmitter reaches the entirety of the spectrum of signaling from the moment of the initial ligand toggling the receptor ( MAGL/ DAGL ) all the way to the receptor firing that signal into elimianation ( FAAH) and then into COOH metabolites that are sent into waste elimination .

 

[notams]

@C No Ego it took me a little while to process ^^^ that. I needed my little black medical book - it's like a textbook they give to nurses. That thing was hard to find.

 

[C No Ego]

@C No Ego it took me a little while to process ^^^ that. I needed my little black medical book - it's like a textbook they give to nurses. That thing was hard to find.

yeah, the depolarization is the way the ligand ( lipid compound) travels backwards from post to pre synaptic . the cell cleaves phospatidylcholine/serine from the lipid bi-layer to form the endocanabinoid signal . when more overcitabilty occurs more cleavage happens to slow down the over excitement ... as based on diet ( omega fatty acids) our cells have the lipids to form the signals . cells' pulling from lipid reserves to make signaling means the diet is very important to keep optimal lipids in place ... ingesting cannabis provides lipids that can signal without cleavage , no displacement ( void) from the signaling either ( endocannabinoid deficiencies) ....

 

[Roffa]

Hi there! Coming late to this: I have relapsing-remitting MS and I have heavy muscle spasms and nerve pain at the moment, for which I take cannabis. I vaporize the whole flower, am thinking to start pressing rosin, to get more reliable THC content. I do vape for the THC, CBD strains never brought me relief. I have found that the type of vaporizer does make a difference in the effect, I think differen entourage effects due to different heating profiles, vaping temps etc. I learned micro-dosing the hard way, through a lot of trial and error. It's a shame that information on cannabs and MS is so hard to come by.

 

[notams]

... I have found that the type of vaporizer does make a difference in the effect, I think differen entourage effects due to different heating profiles, vaping temps etc. I learned micro-dosing the hard way, through a lot of trial and error. It's a shame that information on cannabs and MS is so hard to come by.

Amen brother. So hard to find detailed info on dosing with vapes.

I have a system I developed over time that works for me. It involved a lot of journaling. I kept "session notes" for a long time. That really helped me see what worked and what didn't work.

 

[Roffa]

Amen brother. So hard to find detailed info on dosing with vapes.

I have a system I developed over time that works for me. It involved a lot of journaling. I kept "session notes" for a long time. That really helped me see what worked and what didn't work.

I confess I have done spreadsheets....

 

[DRCousCous]

I can't be the only one. Never fun to talk about. But, might help to talk about it.

I'm dealing with Primary Progressive. Several years.

I don't want to piggyback or derail an MS thread, but I feel like those of you with progressive MS are experiencing the closest to what I am. I have an autoimmune CNS disease called Stiff Person Syndrome, which causes severe spasms, spasticity, and pain in the core and connected upper limb muscles. I also have a couple of other autoimmune disorders, including peripheral neuropathy (possibly related to T1 diabetes) and small fiber neuropathy (presumed to be autoimmune, but nobody knows).

I was suspected of having RRMS in 2015 after a bout of severe neuralgia, facial tics, muscle spasms, and vision issues. MRIs were negative. Then I was suspected of having MS again in 2019 after more nerve pain and signaling kind of issues, then by Fall 2019 I couldn't walk on some days, having severe spasms, and by April 2020 I was incapable of moving unassisted at all and was diagnosed with SPS. They initially thought it was PPMS in 2019, but MRIs were inconclusive and the spinal tap is what finally showed the root of the issue. I had sky high proteins (blood brain barrier compromised) and antibodies.

Long story short, I spent a few years lurking on MS forums, and I experience a lot of the same symptoms as folks with progressive MS. My prognosis is probably different, but my treatments are similar as well! I get two days of infusions with IVIg and high dose steroids every three weeks, and will switch to Rituximab when the IVIg stops working. I also have to take a ton of muscle relaxants and benzodiazepine to control spasticity and muscle stiffness.

So why MMJ? Like you, I hadn't used cannabis in almost three decades before I was diagnosed last year. I've found that macrodosing (lol) works best for me. I use a lot of edibles and vape regularly and frequently to help control symptoms. What I've found most effective for me is using a combination of CBD:CBG:THC rich dry herb throughout the morning and early afternoon, and switch to THC in the evening.

There are only a couple hundred people in the US with SPS, so I've never met anyone with the disease. I've heard of two people but haven't been able to contact them. So again, thank you for sharing your journey, and even if we don't share the same disease, we do have a few things in common. Also...the real reason I use MMJ is to avoid opioids and higher doses of benzos. I know that when those two medications kick in, there's no coming back for someone with my disease. So my doctors asked me to use medical cannabis to reduce or eliminate my need for those drugs. So far, I've avoided opiates entirely and have reduced benzo usage to very low doses. So MMJ works well for me in that regards.

Thank you!