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MDMA and MS?

MS affects everyone differently and at different rates and in different ways.
Most people normally experience some kind of odd sensory changes first - pins and needles or burning or tingling in their extremities. Or numbness. Then later symptoms happen. It usually affects balance, vision, walking ability, and the gastrointestinal tract/bowel/bladder. Sexual dysfunction is also often common.

In me personally, whatever undiagnosed illness I have or whatever MDMA induced neuropathy I have, causes my stomach and lower back to become inflamed and painful, my jaw and throat to feel tight and restrictive with occasional, infrequent (but currently active) minor problems swallowing, sexual dysfunction, my legs and arms to feel weak and with tingling or 'heaviness', brain fog like spaceyness. The symptoms come and go and seem to flare arbitrarily.

I also have had visual snow, since long before I did the MDMA, which manifests as static in dark light, some floaters, light sensitivity, odd colouring of my visual field, pain, pressure and more. I also have lazy eyes (since I was a child) and I'm myopic.

I have nearly every presenting symptom for MS but my brain MRI came back clear, that's all I can tell you. I'm much more starting to believe I possibly have a chiari malformation as Cotcha proposed, that was harshly worsened by the MDMA. That my symptoms are so much worse when I bend or put pressure on my neck would indicate that, and the symptoms do overlap somewhat. Or I do just plum have MS and it's too early to show up on a scan. I've also had severe OCD in the past.

Your symptoms sound quite atypical of MS, seemingly all localised to your head bar the tremors. I have heard other MDMA users on here say that they had varying degrees of tremor afterwards so it's not unheard of.

I'm no drugs expert, I did the relatively tame if not insignificant dose of 150mg MDMA once as a half drunk lark with a more experienced friend following a bad day, he was fine and I had a great experience on the night and then this all happened afterwards. I'm 7 months in now, in someways better than I was at the start and in others worse. I cant tell how much is me slowly improving or just getting used to this neuropathic nightmare. It's fallen into a repetitive pattern of flares and remissions on a near-monthly basis, but each relapse generally feeling a little less intense.

Yesterday I got my 'good' news, and felt pretty great, so great I did about 90 minutes walk in three chunks. Then my leg felt so heavy and tired I had to take painkillers. Then last night, my belly and lower back blew up again, my throat is tight when I eat again and I felt nauseous again. It's crazy.

Sorry I can't offer anymore help, all I can say is you probably don't have MS, but that doesn't help the physical nightmare or mental rollercoaster does it? If you do need someone to vent though, feel free to send me a msg.
 
From my perspective Suedo's clinical picture is probably Chiari and that compression of the cranial nerves could explain the lazy eye, there would probably be neuropathic inflammation all over from the irritation, and since MDMA has been shown to activate microglia, (the immune cells mainly responsible for neuropathic pain / fibromyalgia, as well as MS) maybe MDMA worsened the already present inflammation.
 
Okay so as I try and continue to figure out what's wrong with me

- We've established Chiari Malformations needn't necessarily show up on a solely brain MRI
- My sister and mother have both suffered with odd nerve pains, and similar symptoms to me
- Neither has tested positive for MS during MRI's or other auto-immune with blood tests

So, some questions

- Is there a reason my symptoms would arbitrarily get better and worse, in a seemingly semi-consistent pattern?
- Is there anything other than PT to try and alleviate or prevent these relapses outside of the meds previously stated?
- Is there anyway to uncompress cranial compression?
 
It is possible that a sagittal brain MRI could catch the brainstem/spinal cord in full glory, if you can get a copy of your MRI and the radiologist's report we could look at what they said, and see if they indicated that the brainstem had adequate space, which I have seen done in reports.

Unfortunately from what one neurologist told me here in the U.S they don't really look for specific things in MRIs based on the patients symptoms. So it is possible that Chiari slips through as well.

But you might just have some weird Bell's palsy type thing and herniated disks too, no Chiari explanation needed. And yes there is a surgery for Chiari.

Fibromyalgia-ish diseases wax and wane strangely - the inflammatory/immune systems are very complicated. I do believe fibromyalgia tends to run in families but I'll have to double check that.

Sorry, you've had nerve conduction studies right?

Exercise has been shown to be anti-inflammatory. You also don't want your muscles to atrophy! Eat plenty of protein. If you have bad posture it is a must to fix it. Personally I am now taking minocycline and I suggest you try it if you can find a doctor to prescribe it for neuropathic pain.
 
hey suedonym.
how are you currently feeling?
do you still have dysphagia (trouble swallowing)?

let me know if you are still checking this thread, i might be of some help.

 
Hey guys checking in.

We've had better weather this side of the pond so I've finally been able to exercise more regularly. I'm trying to do 45mins-2hrs everyday. What if any benefit happens remains to be seen, but at least my skins getting some natural vitamin D and I'm getting some "fresh" air.

Also taking supplements. The dark lines in my peripheral vision at night or in artificial lighting are stubbornly persistent, so I've been taking supplements to boost vision. Also magnesium and vitamin D like usual. I visited a friend, and found drinking carbonated drinks now causes my entire stomach and back to blow up and become tight and painful. I don't known if its the sugar or the bubblyness but I've cut them out of my diet, along with cheese, crisps, and all sugary food bar yoghurts. Also started drinking green tea.

Throat problems have waxed and waned but now the back of my mouth feel sore again, like I'm on the precipice of a cold, like a milder version of the intense stabbing pain I had at Christmas. I can live with it even if its irritating.

I've had an MRI now which was clear and visited an optician and an opthamologist, nothing apparently wrong, just gave me eye drops, and said it was floaters. It's depressing to be disappointed by good news. Healthy people will never know the insanity of wanting to be told you're ill just so you can know whats up and get help finally.
 
Cotcha, the person above me messaged me saying I may have "dysregulation of your hpta axis, as well as endocrine signal issues", could you shed anymore light on this as you're my guy to go to on this stuff? They said they'd had similar issues unrelated to drugs but apparently completely recovered.
 
Well I'm sure your HPTA axis is skewed in terms of excess stress hormones right now but I don't know if that's the root cause of your symptoms. Some aberration of the immune system/blood nerve barrier or something is much more fitting in my opinion. But you could see an endocrinologist and have him check some hormone levels if that hasn't been done yet.

Have you ever been on any immunosuppressants? I feel like it's about time to whip out the prednisone and IVIG.

For starters you could try high dose curcumin, hopefully with bioperine/pepper to increase absorption greatly. Studies have gone over 8 grams a day for months with no side effects other than rarely diarrhea and such. I would try a couple grams a day, see how that goes, and then try around 8 grams a day for a couple weeks, if you can afford it. Curcumin inhibits some of the chief cells involved in neuropathy.
 
I wouldn't know how to go about seeing an Endocrinologist. Getting any help at all is a nightmare despite our fairly robust British health care system. I guess I should try though. I need to eliminate everything. I want to exercise more and eat healthier so I can have another blood test and eliminate other possibilities.

I have been taking a tablet form of turmeric with curcumin's with my main meal fairly regularly. I cant go on immunosuppressants as in the medical community's eyes there's nothing wrong with me. Until I get a diagnosis I cant get any help.
 
Weird random shit. One day whilst out all day at a convention my entire close ranger vision completely went. It's fine now, but it was scary. I feel this may be panic related. My OCD like tension has been way worse too.

What perplexes me the most is my mum says she's had a lot of the same symptoms. She told me when she was in her twenties (she's nearly 60 now) her legs would sometimes be numb and stiff for a week or so at a time. She was a nurse so was on her feet a lot but still. She says her throat can suddenly swell up too, as can her belly bloat, and have pressure on her back, and standing in one spot for a while can make her legs hurt. She's also had weird ear trouble. She's also a worrier like me, although not to my anxiety worst. She revealed to me she's been on anti-dp's in the past. These symptoms are too spookily similar to be ignorable. She does smoke but not excessively, drinks regularly but in very small doses, is overweight and quite inactive but doesn't overeat and eats fairly averagely/healthily.

This is an odd puzzle. If she'd had MS for forty years she should be in a wheelchair by now. But she isn't. What the fuck does she have?
 
I might draw a comparison to mental illness here - schizophrenia might only affect 1% of the population, and there are various genes involved, but when we look at the family members of people with schizophrenia, they can tend to have more "magical thinking" as well. Those magical thinkers might only have one or two genes while the schizophrenics really have a lot. So while schizophrenia might be somewhat rare the much milder stuff might be more common. So very mild MS type diseases (neuropathy, chronic inflammatory demyelinating polyneuropathy, not even necessarily a demyelinating disease as well) could be somewhat common but they just don't get identified because it's not as blatant as something like full blown MS.

Personally, I think you should have your genome sequenced with 23andme if you can afford it. I got mine done and I have learned many very interesting things about myself. When you upload your genome data into a website called promethase it sorts all your different mutations by good or bad and how much association there is with your version of the mutation and disease. I'd be happy to take a look at your genetics too. It's about 200$ and took 5 weeks. Sorry if you can't afford it :/
 
This is an esoteric/technical subject but I thought I would post some of my recent thoughts on MDMA induced neuropathy for the sake of those who are suffering from it - I have found some very interesting things after learning about ibogaine's efficacy being due to modulation of alpha3beta4 nicotinic receptors.

There are some studies that suggest nicotinic receptors are relevant to MDMA (http://www.ncbi.nlm.nih.gov/pubmed/20132834 http://www.ncbi.nlm.nih.gov/pubmed/17614110), and that MDMA might be an a7 partial agonist. There appears to be upregulation of some nicotinic receptors with administration of MDMA/METH. Even if MDMA has no direct action at a3b4, maybe it could affect a3b4 receptor regulation via calcium channels? - From http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4002362/ - "In addition, nAChR activity can be regulated by cytoplasmic calcium levels, suggesting a complex reciprocal relationship." a7 is especially important regarding calcium influx. - " The α7 nAChR subtype has one of the highest permeabilities to calcium7, the activation of which can raise cytoplasmic calcium levels and trigger a series of calcium-dependent intracellular processes." It appears from that nicotinic receptor activation begets calcium and calcium regulates nicotinic receptors, so it sounds like there is potential for a positive feedback loop between nicotinic receptors and calcium.

I wonder if changes in nicotinic receptor function (and hence changes in calcium channel function, see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4002362/ again) are otherwise contributing to some MDMA abuser's issues, including some of the strange neuropathy that has been reported by some. Alpha3Beta4 receptor antagonists like the a-conotoxins have potent efficacy for neuropathic pain (see http://www.ncbi.nlm.nih.gov/pubmed/22306793) and calcium channel antagonists have efficacy for neuropathic pain (See http://www.ncbi.nlm.nih.gov/pubmed/11408520 http://www.ncbi.nlm.nih.gov/pubmed/12923812 regarding gabapentin's modulation of calcium channels via a strange GABA-B receptor) and I wonder if there is a connection. I personally have developed a pain amplification syndrome of the pelvis, where the a3b4 receptor is mediating 80% of acetylcholine induced currents (http://www.ncbi.nlm.nih.gov/pubmed/16715294). So call me crazy but I think there's a connection between this possible MDMA induced altered nicotinic receptor function and neuropathy.
 
Does anyone know what happened to this guy Suedonym? He seems to have stopped posting and I have very similar symptoms to what he had.
 
OMG laying here thinking that same thing so they got me on gabs it's a non narcotic. It it really helps with my RLS
 
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