MDMA and MS?

[Cotcha Yankinov]

Personally I'd be so much more interested to see your spinal MRIs than your brain MRI. My curiosity is peaked after learning of this chronic sciatica of yours. I would bet you have a herniation(s) at your very lower lumbar vertebrae, where your sciatic nerves exit. When the caude equina is involved you can get many many symptoms. The fact that you had sciatica for over a year with a physical cause highlights my opinion that you have severe musculoskeletal/compression neuropathy/likely disk degeneration issues.

One type of neuropathy is where the nerves have a lack of oxygen because tiny arteries in the nerves themselves are compressed physically AND OR are being constricted by adrenaline and similar vasoconstrictive substances. I think that if you combine a constrictive substance like MDMA+the resulting chronic stress/adrenaline that induces more vasoconstriction with a compression neuropathy like sciatica you could very well achieve some pretty lovely symptoms assuming you induce enough oxygen deprivation for nerve cells to die off, which is very possible. Reduced regeneration of nerve cells post MDMA is another contributing factor.

There are sertotonin receptors on the walls of blood vessels that help regulate vasoconstriction, there is even a drug that works exactly opposite of MDMA developed specifically for vascular migraine. I think a bout of nerve oxygen deprivation could create global symptoms. Both the prior compression (sciatica) and vasoconstriction would be contributing. I should mention that LSD is a cure for many cluster headache suffered because that's how well it constricts the arteries, an MDMA metabolite works the same way.

On some level you seem convinced that it's MS based on the severity of the symptoms, I can't stress enough that standard peripheral neuropathy is a bitch and a half.

I still really think you should sign yourself up for physical therapy and continue progressing through light walking up into doing cardio- it's how you develop now arteries to supply your nerves.

However, if a disk disease is at the root of many of your symptoms, I'm sure you'll be talking with the spinal surgeons soon enough, artificial disk replacement has honestly come a long way. They can go in through the abdomen (pushing the organs aside) and replace the disk with a high rate of success. Then they'll put your ass in physical therapy hopefully but mind you if you have musculoskeletal dysfunction (like bad posture) that has caused your disk to degenerate then I would prefer you do some physical therapy before the surgery as well.

When's this MRI of yours again?

 

[Cotcha Yankinov]

https://en.m.wikipedia.org/wiki/Cauda_equina_syndrome

"Delayed or severe nerve damage can mean up to several years' recovery time because nerve growth is exceptionally slow."- very interesting, peripheral nerves generally heal very quickly while the spinal cord heals extremely slowly if at all, so the caude equina seems somewhat in the middle.

 

[suedonym]

Hey man. It's odd though my back problems largely went away on their own, with only a very rare twinge. It used to be quite disablingly painful.

My assumption that it's MS is based on the fact that it has all the presenting symptoms, and I had one incidence of optic neuritis which caused persisting visual disturbances years ago. Long before I touched any illicit substance. I believe that may have been a flare up, and the MDMA may have triggered another one. Apparently there is a condition which does attack the spine and optic nerves specifically, distinct from MS or neuropathy.

I thought this theory was water tight until an otherwise physically fit guy messaged me saying MDMA had caused serious neuropathic damage to his body for over a year. Both mental and physical symptoms. A list as long as my arm. Apparently the mental symptoms are clearing up but he's still suffering with a lot of physical disability.

I don't mean to insult you Cotcha as you've been a good friend. But it's a little understandable that your body would be more fucked in the first place as when you were a kid you, by your own admission, seriously abused drugs. One time, if it's not too personal I wouldn't mind finding out how you got in that place in the first place? Like a mid-teenager doing really brain raping levels of narcotics. I'm only curious as you seem like such a sensitive and sweet and intelligent young man now, it's hard to picture you doing that or being in that position.

I still don't have a date for my MRI, they've yet to get back to me. If I haven't heard from them by the start of February I'll contact them again. The consultant said possibly mid February, or 'about six weeks'. I played a couple of hours of video games earlier and tonight my visual snow and eye blurriness is worse. Drops, cold compresses and all the shit in the world isn't helping. I hope it's just an exacerbation, with the eye problems I'd had for years I'm kinda used to it but the length to which my eyes stay impaired after using them extensively seems to get longer and longer. Ugh boy, if it's not one thing it's another.

 

[suedonym]

On a side note, may I ask, why does doing push ups cause me to experience really bad vertigo or a massive flare up of my fatigue?

Simple arm exercises don't and neither does a small amount of walking or gentle swimming. I imagine it's because I'm putting pressure on my spine and whole body when I do it? I used to be able to fairly comfortably lift my whole body up suspended for 10 seconds or so but now my arms and legs really wobble. And then 20-30 minutes later; awful fatigue, floppiness or horrible, disorientating vertigo. What's the medical reason for that?

 

[Cotcha Yankinov]

I'll be honest, when I first learned of your optic neuritis it really disheartened me because with that going on prior to MDMA it becomes difficult to explain your symptoms without resorting to a demyelinating disease.. Eye blood circulation problems are the only other explanation really and just aren't that likely.. Did they ever give you an explanation for your optic neuritis anyways? Regarding the condition that attacks the spine/eyes, is that transverse myelitis?

On some level with many people's adverse reactions to MDMA I wonder about the possibility of a contaminant in the synthesis such as heavy metal poisoning or some such. I wish I new more about chemistry to know what might go wrong with the dance floor chemistry that we see in production of most MDMA. If this gentleman you've talked to is open to communication I'd be very curious to hear about a couple things, such as whether nerve conduction studies have shown normal standard peripheral neuropathy results or if he still has the symptoms but nerve conduction studies are normal (compression/vasoconstriction neuropathy doesn't actually show up on tests and I have talked to people who seem to have vasoconstriction neuropathy problems after MDMA). Or if he's had a brain MRI to look at his myelination. I'll have to ask a friend but there it is conceivable that MDMA's neuron injury extends to he peripheral nervous system or if it wasn't MDMA there could definitely be peripheral nervous system toxicity if it was this one substance that gets sold as MDMA.

About my drug use and how I got there... I started abusing my adderall prescription and things went downhill pretty fast, someone gave me some ecstasy to try and the funny thing was he took the same pill as me and had a seizure whilst I did not get high at all, yet I was dumb enough to not learn from that XD next time I got an ecstasy pill (probably not MDMA) that gave me the best euphoria I ever felt for a good 3 days and I was "hooked" as they say.

Chronic vertigo is an inner ear disorder but in some people with enough head motion (typically looking up does it for most people) it can be set off even if there isn't serious inner ear pathology. Basically if you keep your head tilted at a certain angle long enough these "crystals" can fall into different chambers of your inner ear and set off bad vertigo. Just wondering, you don't have any hint of dyslexia do you? Confusing left and right, positive and negative, mixing up words and letters and such?

I don't know why it wouldn't be set off swimming though... Maybe the angle isn't being sustained long enough or the angle is different? I suppose another possibility is that it's due to over exertion and this should be seen with other exercises. But by the way I fucking applaud any exercise you do If you nervous system is going downhill for whatever reason we gotta keep your muscles from atrophying.

Muscle atrophy is hell. It sounds like you're already well on your way to muscle atrophy as well as hell though

 

[suedonym]

Hey gents, having a moderately bad time with it currently so just talking aloud like usual to blow off steam. Played a video game pretty heavily for a few days and now my extremities are back in tingly zap hell again. It's happened before, it's like my brain almost 'overheats' somehow? One way or another I seem to 'relapse' at least once a month if not more.

Like I say even before this post MDMA shit happened, I had two spells over the five years after my initial optic neuritis, where after overdoing it with games/computers I had weird symptoms - tinnitus, pressure behind my eyes, pain going from my eye round the side of my head and into the top of my spine - that lasted a week or so and then go? It was all largely in my brain, my body was okay. Now it's like that dysfunction had spread to my whole body.

Still haven't heard anything about my MRI appointment, I fear they've completely forgotten about it. I'll have to call again. I don't wake up before 2-3pm everyday now even if I take sleeping meds, which I've had to start doing again, so getting any shit done is hard. I feel pathetically helpless.

Had a one month follow-up appointment with my shrink on Tuesday. She revealed to me she has Crohn's, and experience's horrible on/off fatigue with it as well. You don't realise how many people are sick in quiet subtle ways.

Apparently, if this is the worst case scenario, there's heavy criteria to being considered for HSCT, and even if approved you can get sepsis or worse afterwards. Still if it was a risk of other symptoms or completely lose control of my body then it'd be a no-brainer. It's odd, one school says have it the sooner the better, the better the chance of recovering nerve damage and remyelination and stopping disease progression, yet most facilities, certainly in Britain and North America, won't treat you unless your disability level is quite severe, it's odd.

Anyway Cotcha old buddy, no never diagnosed with Dyslexia - clumsy as shit and terrible at sports my whole life, and my mum would often complain of my leaning against things and not being able to support my own weight at times, but my reading, and written and verbal English was always pretty advanced. The visual snow makes it difficult to read for very long, though. Very shy so often would stammer around people or have trouble speaking up which made me sound like I had a speech impediment but in a neutral setting I have always been able to speak very well. Well until recently, where the back of throat problems and jaw stiffness has given me some trouble. One weird symptom is a feeling like my throat has some post-nasal drip, like gunk is constantly shooting down the back of my throat.

I am currently in the processing/assessment stage for possible aspergers or autism spectrum disorders but that's about it. As regards outside maladies.

And no, I never had any help at all. I've pretty much had to self-diagnose my optic neuritis, as one GP and two opticians couldn't find anything wrong with my eyes or optic nerves. Plenty wanted to prescribe me expensive new glasses but none offered me any explanation or help. And everyone dismissed the symptoms as 'anxiety' which is why I get infuriated with people who dismiss obvious physical symptoms as such now.

 

[suedonym]

On a separate point, I was reading the MDMA Recovery and Support thread earlier. I totally related to those talking about how their sex drive going has largely robbed them of their sense of self. Mines been up and down since the MDMA but it's never been right. At the minute it's very reduced.

As a guy having this throbbing divining rod glued to the front of your pelvis defines so much of your identity and personality from the onset of puberty onwards. Without that sex drive, without those erections, I've found so much of my lust for life has gone. I cant plan a future - little desire for girls, little desire for sex, can't plan on ever having a relationship, can't get married, can't have children. Can't have sex for pleasure as I rarely if ever orgasm, and getting more than a semi-hard-and-difficult-to-sustain erection is a rarity. Oh it just totally makes you feel asexual, or a eunuch. We live in a culture depicting most people's healthy sex drives and it feels so alien to me now.

Sexual dysfunction is a side effect of neurological and auto-immune disorders. But also apparently MDMA use. It's been over four months now since I did it. Some people's side effects last for a couple of years or more though right?

 

[Cotcha Yankinov]

Suedo, you have GOT to follow this link to Chiari malformation and take a look. It would certainly explain your symptoms and the circumstances under which they occur, and that you originally spent a long time looking up at the sky around the time that you did MDMA seems suspicious. I don't know if you can see Chiari on a brain MRI but you certainly can on a neck MRI and I'd be very curious to have yours checked out. https://en.m.wikipedia.org/wiki/Arnold–Chiari_malformation Check out the symptoms. Tell me they don't sound EXACTLY like you.

The most common source of death with MDMA is basically brain swelling, it happens when you ingest too much water especially. Did you happen to drink too much water or anything when you did MDMA? I was thinking a bit of brain swelling from MDMA would worsen Chiari and that could be the connection.

It would be some real shit if you had some level of Chiari. My family doctor had 2 adult patients that had to have surgery for it so it's not uncommon.

I relate to your childhood, I'm pretty sure I'm somewhere on the autism along with the other guys on my dad's side. It has it's ups and downs I suppose..

 

[suedonym]

Hey guys sorry for disappearing for a while. I try not to bog you all down with my shit for too long. Well my initial MRI had to be postponed and I'm finally having it done tomorrow. Nervous but oddly excited that come middle-to-late April I might finally have a clearer idea what's wrong with me. For better or worse.

I'm holding up, getting by. Still got a litany of symptoms. Most stubbornly persistent is my gastrointestinal problems. And sexual dysfunction. My legs are also continued to be weak, I can walk and get around but if I stand up in one spot for any meaningful length of time they feel weak as if I'm applying great pressure to them. I'm sure having put shit loads of weight on hasn't helped but you know. That kicked in around December time and has probably gotten worse. Some of my neuropathy seems to have subsided or lessened though, which is nice. Although I was awoken mid sleep last night for the first time in ages with my back feeling super tight and painful again so I think I had another minor 'relapse'.

That information about Chiari Malformation is really interesting Cotcha, it'd certainly explain a lot. I'll keep it in mind when I get my results. I'm still convinced I have some kind of auto-immune disorder but we'll see. I did drink a reasonable amount of alcohol the night I did the MDMA, and the night before but not excessive.

Well I went through the process of autism testing and apparently I don't qualify. I think this is largely due to the family of the referral survey they made my mother fill in which she answered with the slightly rose tinted view of me she has. So I don't know, they said by second stage of testing that I didn't show enough obvious signs to qualify for further assessment. So I guess I'm just socially awkward, nerdishly obsessive and uncoordinated for abstract reasons, yay(!)

I'll let you all know how I get on. And once again thank you for your patience and understanding.

 

[Cotcha Yankinov]

It's amazing how many parents themselves are autistic and don't know it- mostly the guys though.

Let us know how your MRI turns out, let's hope it's all clear.

 

[suedonym]

I don't think either of my parents have it, when they were younger they were both sociable, outgoing, easygoing people with little-to-no social dysfunction or autistic traits. But in other cases, you're probably right.

One thing I have noticed though is, my mum has had a scattershot collection of intermittent symptoms throughout her life including rare spells of minor vertigo, pressure on her back, problems with her ears, stomach tightness. I think they're just low-level anxiety related but the inexplicable back pressures speaks the most - they're all brain/spine dysfunction and MS signs. If I do end up having it, it makes me wonder if she's had a very low level version of it all along?

 

[suedonym]

Well two weeks later and haven't got my results yet, they said two weeks so hopefully it'll be sometime this week.

I'm slightly freaking out as I've seemingly developed a new symptom. In the very periphery of my vision on either side I'm seeing a black shadowy line. It first happened a month or so ago having left the cinema after a long movie, and now it's happened at the end of this week.

I'll admit to having played a lot of video games this week, trying to distract myself as much as possible from the neurosis of waiting on my results which one way or another are going to be a life change. And probably got a little less than adequate sleep.

I've noticed it's more noticeable if I move my head suddenly or specifically directly up and down. It seems to move with the turn of my head and at either apex it's barely visible. I'm hoping it's just some kind of floaters which will go again on its own. I've always had lots of clear floaters but not like a full, dark shadow.

I'm going to lay off the games, but naturally I can't help but worry that my optic neuritis like symptoms are progressing and now my peripheral vision is gonna start going which is scary and depressing. Eye drops and temporary rest/cold compresses seemingly only make it worse, sleep seems to alleviate it only until I have to use my eyes in any meaningful way again.

As I've been largely inactive I haven't had a massive chance to test my other symptoms. I still can't go the loo very easily. The top of my neck tingles on and off. I've had occasional full body neuropathy and leg weakness but not for too long. All my like 'necessary impulses', sex drive, toilet trips, appetite have felt massively dampened down again, but work with some effort.

 

[Cotcha Yankinov]

Remyelination occurs during sleep. I can find the study if you like.

I think you should take minocycline, it is a very interesting compound. It is a microglial inhibitor.

http://www.ncbi.nlm.nih.gov/m/pubmed/21565409/

From wiki

"A 2007 study reported the impact of the antibiotic minocycline on clinical and magnetic resonance imaging (MRI) outcomes and serum immune molecules in 40 MS patients over 24 months of open-label minocycline treatment. Despite a moderately high pretreatment relapse rate in the patient group prior to treatment (1.3/year pre-enrollment; 1.2/year during a three-month baseline period), no relapses occurred between months 6 and 24 on minocycline. Also, despite significant MRI disease-activity pretreatment (19/40 scans had gadolinium-enhancing activity during a three-month run-in), the only patient with gadolinium-enhancing lesions on MRI at 12 and 24 months was on half-dose minocycline. Levels of interleukin-12 (IL-12), which at high levels might antagonize the proinflammatory IL-12 receptor, were elevated over 18 months of treatment, as were levels of soluble vascular cell adhesion molecule-1 (VCAM-1). The activity of matrix metalloproteinase-9 was decreased by treatment. Clinical and MRI outcomes in this study were supported by systemic immunological changes and call for further investigation of minocycline in MS.[52][53][48][54]"

Pretty darn good for a generally safe and tolerable med like minocycline. Definitely worth a shot. I'd try 100mg twice a day for a couple months.

 

[suedonym]

I wiki'd it, that does seem positive but the very long list of possible side effects colours me off it a little. That and the fact that it can seemingly cause additional autoimmune.

I've heard a lot of people swear by 'MitoQ' for neuropathy related illnesses. What're your opinions on it if you're familiar?

 

[Cotcha Yankinov]

I haven't heard of mitoQ myself, is that supposed to be coenzyme q10? It inhibits mitochondrial destruction and some people around neuroscience and pharmacology are big supporters.

Minocycline has been shown to reduce mitochondrial biogenesis so coenzyme q10 should be stacked with minocycline. But IMO the real concern is not running out of mitochondria but rather the damage that mitochondria cause to other cells when they do die, from that point of view this possible reduction of mitochondria might almost be therapeutic for neuropathic inflammation. Mitochondria might be essentially feeding the fire.

Now that being said minocycline is a generally safe and well tolerated med, personally I was on it for a year with no side effects, and just started it up again and no side effects yet.

I wouldn't worry about the reports of minocycline auto immune cases/allergies, they are very rare. Nausea and such are the most common symptoms, but for how well it performs for those with microglial disease it is well worth it. Either way, if we are gonna act and get you on an immunosuppressant, it should be before much damage has occurred. I would be happy to find a study that you could print out and take to your doctor regarding minocycline, or you could listen to their suggestion for an immunosuppressant, assuming they have half a brain.

 

[suedonym]

Cheers Cotcha. Well the big news I guess is my head MRI came back completely fine.

Which is a relief. Obviously it doesn't mean I'm out of the woods. MS leasions can appear on the spine, I didn't have a spine scan, or a lumber puncture. But yeah apparently I don't have MS or it's so early days that it's not detectable.

Which is weird after 7 months of expecting the grimly inevitable to have less answers than I already did with worsening symptoms in some areas?

 

[Cotcha Yankinov]

Well one remaining explanation for neuropathy would be compression of nerves / inadequate bloodflow.

But lesions solely on the spine is more in the neighborhood of transverse myelitis, which is possible but I'm starting to think traditional neuropathy or Chiari is more likely. I think a neck MRI is probably the next step, which hopefully should get a better look at the cranio-cervical junction, to see how much room your brain stem has. Chiari does definitely match your symptoms. You could still have nerve inflammation - this is common of the cranial nerves.

I totally called that your MRI would be clear btw And if I recall correctly my stance was that if your MRI comes back clear you should do the physical therapy religiously for a couple months minimum and see if there's improvement. A neck MRI would be nice first though.

 

[suedonym]

Sorry if you already said but can you recommend me any good PT exercise for full body neuropathy? Every time I do even moderate walking exercise my lower body still tingles but not quite as much as they did.

Would Chiari not show up on a brain MRI? Is it too descended to show up?

I'm still not entirely convinced I don't have some kind of MS or Auto Immune, I've heard stories of white matter malformations that characterise the disease not showing up in it's earliest stages but I'll take it as I don't, for now. That no sign of any optic nerve abnormality didn't show up is still a shock to me.

Whats the difference between inflammatory neuropathy and MS anyway, isn't the end result roughly the same?

 

[Cotcha Yankinov]

I think for anything besides walking you should work closely with a physical therapist, especially concerning posture correction, which is the best way to correct compression neuropathy. I would be most concerned with neck posture.

You might have herniated disks in your spine, it could account for your symptoms. Most people get herniations in their lifetime. I think the next step is a cervical/lumbar MRI. Don't bother for a thoracic MRI, herniations there are very rare.

I don't think that they can see the brain stem very well on a typical brain MRI, it would be easier to see from a neck scan.

Inflammatory neuropathy can result in pain and the symptoms of neuropathy but there isn't true demyelination (a chunk of missing white matter in the brain or spinal cord) or detectable nerve communication issues in most cases. You can still get pins and needles and some dysfunction/weakness.

So yeah, my advice would be start with a cervical MRI and check for Chiari / disk degeneration, and then check lumbar for a lower disk herniation that could explain the leg symptoms. L5-S1 herniations are extremely common. Although people get sciatic issues without disk degeneration - in that case the appropriate gluteal stretches are in order.

Personally a chiropractor helped mobilize my spine and fix my scoliosis/forward hunched over posture. They can often times do X-rays and that at least gives you some idea of what is going on with the vertebrae, better than nothing anyways.

I now have immense respect for the musculoskeletal system and all the nerves that snake through it.

 

[Drunkdancer]

I am also extremely worried I have triggered MS from taking 9 bombs of crystal MD 8 months ago. I am still extremely shakey, trembling hands, lips and teeth. My vision still has a lot of visual snow and I hear high pitched noise from inside my head constantly. I have in the last 2 months developed the worst symptom yet, my nose is extremely numb and pulsating, like burning and tingling on the end and the most umcofortable feeling on the bridge. Sometimes it goes so intense it makes it so I cant speak properly and runs as far as the start of my forehead. I am literally living a nightmare, I never feel normal. Does this sound like the start or Ms?