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MDMA and MS?

Hey man. Here's hoping. I really think I'm straight fuck out of luck though.
There's a sliding scale of optimism here. There's endless anecdotal reports of MS being 'manageable' and 'treatable' and 'a good prognosis' and then there's websites presumably designed to scare you into radical life change which say 'You'll be bed bound or in a wheelchair in ten years, sorry kid lol'. So I don't even know what to think.

I am going to try and seriously change my diet though, and do a solid 30 minutes of walking a day. Keep taking my vitamins. Cotcha, I'm already taking Vitamin D3, Turmeric, A generic Multivitamin, Cod Liver Oil, and Magnesium, do you have any more suggestions for healthy nerve function or nerve regeneration? Any foods or herbs or supplements?
 
Absolutely, 5-HTP combined with a green tea extract called ECGC. I would start out at 100mg 5HTP and then go up to 200mg. It will help your brain make serotonin. The ECGC will make the 5HTP last longer in your blood stream and make it more likely to be absorbed in your brain. Your brain has a hard time making 5HTP after MDMA so it's best to give it externally so your brain can make serotonin out of it. I would make sure to get plenty of vitamin E as well.

I much approve of the exercise, if you ever get to the point to where you can jog I think your situation will improve a lot from then on. Make sure you're getting some protein, honestly some of the whey protein milk products are pretty handy, if they don't mess up your stomach.

How is your sleep doing? I'm surprised the neurologist didn't consider Gabapentin.

Edit: take b vitamins especially B12 for nerves, but b6 is a cofactor that will help your stomach absorb 5HTP
 
I have to take medication to sleep, unless I've consumed a reasonable body of alcohol, which I'm considering forgoing as I think it might be a flare trigger, I seemingly biologically cannot sleep otherwise, independent of exercise or anything else. If MS damages or slows signals from the brain to the rest of the body, which is why I can't shit, have little appetite, have little libido and have no desire to sleep. Everything the brain should regulate, it can't, because it's fucked.

Are there any specific supplements or products for helping with remyelination?
 
I highly recommend avoiding alcohol, there are much better options that don't inhibit your growth hormone and fragment sleep. Your growth hormones are very important for remyelination, anything that increases your sleep will increase your growth factors and hence remyelination.

You could consider any number of meds for sleep really, there are tons that work by different mechanisms, just let me know if you ever need advice on something for sleep. I would say you should be started on Gabapentin for both symptomatic relief and also enhancing sleep quality which will actually address pathology.

Intuition says that Omega 3's will support the process of myelination. They have proven beneficial in many disease states for other reasons too. A multivitamin especially with vitamin E will help your brain cells and myelin.
 
Forgive me shaky grasp of biology and neuroscience here, but would me taking supplements to boost and help my immune system actually be beneficial or detrimental? If this is my immune system attacking the myelin of my spinal chord and brain, would boosting it not be counter-productive? Or is that not how it works?
 
What you would really want for MS is an immunosuppressor like Ibidulast that suppresses your microglia. But I don't think any substances OTC will trigger an episode of MS in somebody with relapsing/remitting, if anything something like vitamin D would be beneficial even though too much is a bad thing. There is some tentative evidence showing that vitamin D helps and that low vitamin D is often associated with MS, especially concerning distance from the equator.
There is an outspoken biochemist who believes too much vitamin D worsens MDMA because it activates the immune system. I would definitely still try 1000 or 2000iu a day for a couple weeks or months, this won't push you at all into a bad range, especially if you are low which most people are. It is also winter.

It appears a lot of MS is related to a tipping of the balance towards pro inflammatory molecules rather than anti inflammatory molecules. Having all your vitamins in balance will promote a health immune response. The weird part is that it's part of the immune system that repairs the myelin too.
 
I desperately want to start treatment as soon as possible but it'll be weeks before an MRI and a couple of months before conclusive proof. I fear how much worse I'll be in that time.

I honestly can't tell what kind I have. The first month or so it was just sensory, muscle tightness and stomach/bowel trouble, sexual trouble and insomnia. Now it's on/off fatigue, and really quite debilitating muscle weakness and spasms. My entire body feels disconnected from my brain. I can't tell if I've had half a dozen flare up's or two or three really big ones with persisting damage. Also had horrible and sudden food intolerances, I'm having a borderline paleo diet now.

Most online sources say autoimmune is caused by 'environmental factors' with those with a genetic predisposition for it. So MDMA and before that, that course of antibiotics must have been my environmental factors. Being a shut in agoraphobic nerd for chunks of my life probably didn't help either on the Vitamin D front.

I've been taking 2-3,000 ui's of Vitamin D everyday for the past few days. Like you say, there's conflicting evidence some saying absurd doses could help actually repair nerves and others claiming it's either irrelevant or even dangerous. I've heard some people control their MS with diet, and others saying it has no benefit. It's so holistic. Being male and having so many symptoms all at once is also troublingly indicative of it being a serious kind.
 
Well keep in mind there are other demyelination diseases too, for your case a mild demyelinating polyneuropathy comes to mind, and treatment would probably be standard prednisone (which even if your nerve conduction studies come back normal, I would prescribe you anyways). By the way has there been talk of nerve conduction studies yet? It can be hard to seperate peripheral neuropathy from demyelination but at that point if you had a nerve conduction study that showed neuropathy you could consider a lumbar puncture, where we would check for certain anti bodies that could be a sign of your myelination being attacked.

I think a drug induced MS style disease would be unique and it would present strangely, it could be very mild and drawn out. Hopefully if you do have something other than bad deconditioning and peripheral neuropathy then this thing will be detectable. A brain MRI just checks for demyelinating lesions in the brain, I think what's more likely is peripheral nerve involvement for which you would have to do nerve conduction studies/lumbar puncture and maybe even a nerve biopsy to find.

There if a lot of feedback between the brain and gut but I would say that the people who might be able to control their ms with diet probably have food allergies that engage the immune system, and they possibly have a weird enteric nervous system (95% of the serotonin is there anyways). As opposed to being able to eat enough anti inflammatory foods, which I slightly doubt you could do. That being said there is a lot evidence supporting the use of Curcumin as an anti inflammatory and I recommend it as well as take it myself.
 
They've only offered a brain MRI. The doctor seemed to think it was solely a problem of the brain so I'll go along with it. He also said it could be something other than MS (I think he was trying to ensure I don't freak out upon being diagnosed, don't worry mate been there done that). Hopefully not a tumour, heh heh (screams internally).

Nah I have all the classic presenting signs of MS. Difficulty standing up for long, spasticity, muscle weakness, some trouble swallowing, difficulty pissing and shitting, sexual problems, brain fog, unpleasant sensations, overwhelming fatigue, optic neuritis and intermittent tinnitus. I think that intense bodily tone I had right at the start was actually the spasticity. It feels like bits of my muscles at the joints have disintegrated somehow?I know some people on here fucked themselves up with drugs and then 'recovered', sometimes taking months or years, but normally they don't have the presenting physical symptoms. I honestly think I had clinically isolated syndrome years ago, and then the MDMA somehow triggered the full illness. If it wasn't that, it probably would have been something else eventually.

I won't rule anything out though. I've read that side effects of amphetamine use can come 'in waves' and cover a broad range of symptoms. Earlier on it was easier to dismiss as my symptoms were (relatively) mild. I have been taking Curcumin, the first time I took it I felt fantastic, strong, supple, energetic, but that's quickly passed. Don't know if it was a placebo effect. Should I space all my supplements out? I've just been taking them all with my dinner each day? Should I even take Curcumins each day or space it out?

I wonder if with the people on here who've had inflammation or all the presenting signs of MS but either a clean MRI or no presenting obvious signs of the disease had an incidence of CIS? Jury seems to be out between people on here whether MDMA and similar drugs directly cause Auto Immune or not. Certainly months or years after, long after the period for obvious persisting side effects.
 
The immune system is a switch that has a hard time turning off once it's been turned on, and what's seen in the MDMA models is some of the anti-inflammatory effects of MDMA seem to persist. I bet you any inflammatory effects would be more likely to persist. MDMA specifically has been shown to activate the microglia, essentially the microglia go into what's known as an activated state, I seem to remember some research that was wondering what to do about this activated state if they won't come out of it but anything anti inflammatory will help, and antioxidants will help your cells survive the auto immune portion.

Maybe he will do routine blood work (heavy metal check) soon. I feel a nerve conduction study should confirm demyelination in the periphery since really that's where most of your symptoms are.

Just wondering, how will you feel if the MRI comes back normal?
 
I've heard of a revolutionary STEM cell transplant surgery where they basically destroy your immune system with a powerful shot of chemo, and then essentially reset it using your own bone marrow. Although there's a risk of death, and then your immune system is scarily weak to infection afterwards as you've no resistances, it's had amazing results, with a woman who was paralysed by a lesion able to walk again, and a guy half blinded by optic neuritis regaining nearly full visual acuity. It's only in experimental trial phases though and works better in RRMS, in its earliest stages. But there is hope.

I honestly don't know to be honest. I'm so convinced it's this I'd be shocked. I'd probably ask to have an MRI of my spine, or the other procedures you suggested.

Once again, thank you so much for being there for me, and everyone else whose chipped in, especially when I haven't been very nice to be around. Having this little support network and place to vent when I'm so down with it has meant a lot.
 
That might not be the best solution for ms, ms is really thought to be not a disease of demyelination but a disease of lack of remyelination, where immune cells called oligodendrocytes that normally remyelinate the neurons are killed off by auto immune process. So myelin isn't necessarily attacked in some cases. If you killed off the oligodendrocytes there'd be nothing left to remyelinate the neurons. Unless oligodendrocytes are spared with this therapy :0

I think standard immunosuppressants would be a much better option for something presenting relatively mildly, even prednisone. But I'm sure there are options. Anyways, if this is MS it's relatively mild so I think you'll have a good progression and good response to treatment. If you have lesions I promise I'll look into the different treatments for you, but at that point a neurologist better know their shit!
 
It's so early it's inconclusive whether those chosen just went into remission but still.
 
The procedure makes complete sense. But I still think there are better options out there, I know there are a lot of immunosuppressant therapies in today's day so I wouldn't worry about it.

Also I forgot to tell you taking your supplements after a meal is fine you don't have to spread them out or anything just taking them with a meal helps them absorb though
 
I'm trying my hardest to avoid stress. But it's hard, trying hard not to think about the grim inevitable progression of this illness I have. So many have early gradual fatigue and weakness in there legs, slow progression over ten years, sticks to walker to wheelchair. It's stressful trying to avoid stress, heh. Early on, I could pretend it was minor, hell everyone told me it wasn't MS. And now it's so painfully obvious. I fear my bowel will never recover. I can hardly shit at all, it makes me nauseous. Currently my bladder area is vibrating violently, so sooner or later I'll get the bladder problems so often in the illness. I have literally every symptom now. Nothing like being a completionist I guess, the childhood Pokemon fan in me should be pleased. Demyelinating nerve damage, gotta catch it all! I'll be essentially crippled by 40. It's not fair.

The guilt is the worst thing, I try to justify it to myself, that I was having stomach upsets and certain booze intolerances before hand; but the MDMA did this. A simple act of minor fun cost me my whole body. I might never have had another relapse and fell so suddenly and dramatically ill had I not done it. I may have been one the lucky cases of a single incidence of lesions. I wish I'd had a stronger grasp on my health before all this, as I wouldn't have done it.

My brain has actually been vibrating lately. Feeling your own brain get damaged is disquieting. My balance hasn't returned, I cannot stand up straight for too long without feeling quite weak - it's a conscious effort. The fatigue keeps striking at arbitrary times. It's totally disabling when it happens. DMT's can't help recover pre-existing damage, so this level of fucked is how I'm going to stay forever. And every relapse, which seems disturbingly common, will only make it worse. It's a massive psychological burden. I've been up shit creek most of my life and I don't even get a 'nice' version of MS. I get the standard, progressive, abandon all hope ye who enter here, fuck you over permanent nerve damage kind.

I just, unless I get on one of those Stem Cell trials, I just don't have any hope at all.
 
Even if you did have bladder issues I wouldn't absolutely chalk it up to MS just yet, I'm still thinking you have serious musculoskeletal issues with neuropathy/radiculopathy and chronic deconditioning, as well as some component of fibromyalgia (chronic pain) and myofascial pain syndrome that would explain the system wide neuropathy like it has for me. I thought I had MS for a while too. I was really deconditioned too (And I still bet at this point you're chronically deconditioned) but for me things got to the point where I pretty much couldn't stand for more than a couple minutes or raise my arms or move my hand and my scapulas were winging pretty bad because of nerve damage.

Hell there was a 3 month period where I pretty much didn't move my hand. Also lost use of my right foot for quite a while. And of course incontinence issues, which I now know are related to L5-S1 disc herniations, which are the most common disk herniations (I should mention the nerves that innervate the GI tract come out of the lumbar region). Boy was I surprised when my brain MRI was all clear. I think spine MRIs will be much more interesting in your case, as they were for me. So don't count yourself out yet. Keep in mind physical therapy will help you keep your quality of life as long as possible no matter what you have. I really think you should do the physical therapy.
 
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A person, new to the forum messaged me (presumably because if you type 'MDMA causes MS' into google, this thread is one of the top results, depressingly) recently whose been in a very similar boat. Apparently they'd accidentally ingested mdma dissolved in a drink at a party, in Autumn 2014, and now in 2016 there symptoms have persisted. All MRI's and associated nerve tests and GP's appointments have come back fine bizarrely.

This was a person with no prior drug use who was a competitive athlete and presumably in solid physical shape (unlikely my dumpy nerdy arse) with no previously presenting symptoms of a predisposition for neuropathic problems. And like me, there life is ruined, potentially forever only this poor kid didn't even voluntarily take the drug.

It is just so unfair. How can one person be fine, how can some people just take the drug once every month or two and dance all night and have a great time and have little to no problems or dysfunction, and some people's entire bodies are destroyed? How can it be quite that variable? It's like if smoking a little dope caused 50% of people who did it to get a pleasant high, and the other 50% heads exploded. Like surely it shouldn't vary that much? With one, single, isolated fucking use?

It has me worried my scans will come back clean and I'll be stuck with a fucked and worsening body but no actual diagnosis or help. And being dismissed as anxiety when it clearly isn't cunting anxiety.

At least I can largely sleep now unaided, for now. I have to go to bed in the middle of the night but at least I can. I've had to forego so many social events lately as I just can't hack it. Fatigue washes over me on random days, for that time I can barely move.

I still retain hope that if it's MS it can be treated, or if it's 'neuropathy' it will one day go into remission. I haven't heard of anything that follows the pattern mine does, generally CNS is bad, then PN are bad, then a mild period of quiet before it all begins again, in a repeating cycle. With symptoms arbitrarily flaring up all the time for no reason, seemingly getting worse each cycle. I miss little things, things you wouldn't think you'd miss like a sex drive and morning wood and reliably being able to shit and standing up straight for any real period of time.

Guh, the wait for this MRI is intolerable. I don't have a life, I have few simple pleasures, I keep having to let my friends down. My goddamn groin and left upper thigh will not stop vibrating. Everytime I hear a positive news story, like MS being 'cured' by Stem Cell therapy, and it being used to treat other autoimmune disorders, I hear something which depresses me, and rob's me of hope. Honestly right now, I wouldn't ever recommend this drug to anyone. I thought it was just my glitchy broken pasty nerd butt that was fucked over by this, but perfectly healthy and happy people have been permanently damaged by it. A growing, terrifying number.

Why is neuropathy though? If neuropathy isn't an autoimmune disorder if there's nothing 'causing' the nerves to be continually damaged, why do they continue to be damaged? You get your leg fucked in a road traffic accident, it nearly severs you leg off, it'd make sense to have function in that leg be damaged or impaired forever. But when a drug completely leaves your system and it doesn't 'change' anything for better or worse, why should it continue to be damaged? I once had shooting sciatica like pain in my left thigh for over a year or so. I badly pulled my back bending awkwardly whilst working on an arts project for college and I walked with a slight limp and pain for months, especially if I'd been sitting down. I lost a shitload of weight and exercised a lot when I had a job and it eventually went. So clearly a nerve had been compressed and damaged, and exercise was the cure. How could every nerve in my body be compressed now? What is causing it to attack itself if there's no autoimmune? Could an imbalance of chemicals in the brain really cause a body to be fucked like this? Like how a lack of dopamine causes parkinsons?

Oh it's such a mess.
 
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