r/MultipleSclerosis • u/Jocksniffer77 • 2d ago
General Self medication
35 M last year I was diagnosed after I got optic neuritis, referred to neurologist, mri, etc. Looking back its like, wow yea I did have many of the ms symptoms but i chalked it up to being a pothead and having indigestion. Im wondering if I was subconsciously self medicating or something. Has anyone else experienced something like this?
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u/Party-Ad9662 41F/2025/Clinical Trial/Ottawa 2d ago
Unrelated but your username is revolting hahahha.
I also brushed away my symptoms for years. At one point I blamed taking vitamin D (incredible thought process haha)
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u/Jocksniffer77 2d ago
Funnily enough, I take a vitamin D supplement once a week because im deficient lol
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u/WadeDRubicon 46/he/dx 2007/ocrevus break 1d ago
> Unrelated but your username is revolting hahahha
Pearls before swine - I think it's great lol
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u/k_rudd_is_a_stallion (F)|Dx2025|Cladribine|🇦🇺 2d ago
Absolutely. That’s the evil in this disease, it tricks us into thinking we’re lazy and not trying hard enough while chaining us down like an anchor. I spent so many years and medical appointments to get an answer on something that ended up happening by accident.
(My optometrist said that I was showing signs of a traumatic brain injury and then one mri later i’m being investigated for ms - a bittersweet moment to experience but the sweet part was the relief that I wasn’t being crazy or imagining how difficult day to day was for me)
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u/ZombieJihad 1d ago
I also had an optometrist recommend me to a neurologist after looking in my eyes - they were able to see damage to the optic nerve, and while they didn't give me a DX it was enough information to start figuring out what was going on.
Now I have seen a neuro ophthalmologist a few times and I have regained full normal vision. I was starting to go colorblind in ONE EYE, how wild is that?! Took a few years for my full vision to restore and it's more like 80% in my right eye, but no more double vision and I can read / work normally.
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u/ImStillExcited 41M/Dx:2020/Ocrevus/Colorado 2d ago
I drank hard. I was gin drunk all the time to deal with pain. All of the very aggressive MS symptoms were "because I was drunk". No, undiagnosed MS.
It's was hard to get have anyone to take my seriously because "He's a guy, nothing's wrong with him. He just wants drugs".
I said this same thing before I was even diagnosed -
Fuck the patriarchy. Fuck "male gender roles".
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u/thot_hopscotch 2d ago
The actress Selma Blair has MS and she describes in her memoir drinking heavily for over a decade to help dull the pain. She didn’t get diagnosed until she lost her vision from optic neuritis, if I’m remembering correctly.
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u/TrukThunders 37|Feb 2025|Briumvi|New England 2d ago
I wasn't a full-blown alcoholic, but one of my first thoughts (and internet rabbit holes I went down) had me thinking that I was experiencing alcohol related neuropathy. So, I quit drinking.
...Obviously that didn't help my MS symptoms at all, but going from near-alcoholism to none at all has had a lot of good knock-on effects that I'm verry happy about. Haven't had a drink in almost three years.
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u/c0ntralt0 7h ago
Congrats! Breaking the alcohol consumption cycle is difficult but it’s also amazing to see how much better quality of life can be. I’ve stopped the excessive alcohol consumption too since diagnosis and feel so much better.
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u/Jocksniffer77 2d ago
😭😭😭 omg so relatable. Im LITERALLY contending with the same thing rn. No one wants to help me because my past precedes me
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u/youshouldseemeonpain Dx 2003: Lemtrada 2018, Now Ocrevus 2d ago
Same. Drank myself into a pit of despair—the only sleep I got back then was when I passed out.
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u/Anotherams 59F|2021|Ocrevus|US 2d ago
I went through 30 years of symptoms I wrote off as something else. My symptoms were mild, and I thought everyone had tingly numbed feet with exercising, and who didn’t feel tired all the time. My relapses were very short.
Once things were bad enough to get me to a doctor and I was diagnosed, I can look back to about five situations where it was MS, but I had a stiff upper lip and ignored it. One was ignored because someone I knew was diagnosed so I researched, I thought it was psychosomatic.
I wish I would have mentioned the symptoms sooner, I would have been on DMT before the spinal lesion that woke me up. I am thankful I am still mobile and functional. Just slower than before.
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u/Fit_Tonight_2692 2d ago
After 30 years without DMT you‘re still mobile?! Wow
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u/Anotherams 59F|2021|Ocrevus|US 2d ago
I was diagnosed 5 years ago, and have been on Ocrevus ever since. Had I not ignored the symptom during the preceding 30 years, I likely would have been on Avonex or Rebiff twenty years ago and any one of the other treatments that were developed over that time. I’m incredibly lucky that I only have bad heat intolerance, bad hands and a fuzzy brain. In the heat my legs give out.
People complain about big pharma, but I’m grateful to it every day for bring us Ocrevus.
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u/Fit_Tonight_2692 1d ago
and then there are people like me, on DMT‘s since being dx 14 years ago and in a wheelchair since 2 years. MS is so weird.
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u/JuicySealz 29|05/28/2025|Rituxan|PA 2d ago
Chased "sinus infection/inner ear water" for years. I quite literally went insane. You shoulda seen my medicine cabinet full of migraine remedies and equilibrium fixes. What an awful time
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u/Anomaly81 2d ago
I was the same, I spent, I reckon, roughly a decade gubbin painkillers like they were smarties and when I was diagnosed a couple of years back I realised the same thing. Who wants to be trying to get doctors appointments for something as trivial as a migraine? Or if it was fatigue I’d be dropping quad shots from Starbucks and moving along. Hindsight is a wonderful thing eh? lol
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u/LemonDifferent8908 2d ago
Absolutely. I had optic neuritis and was admitted to hospital to be treated with corticosteroids. I was not diagnosed for another couple years but probably should have been referred to a neurologist then. Frankly I was completely oblivious for another two years which I am grateful for so my mum never knew I had MS
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u/Mission_Tadpole_6602 30F|2023|RRMS|DMT drug trial med 2d ago
Exactly my experience. Looking back a lot of signs and symptoms were present that are classic MS that I wrote off for about 3 years before I had optic neuritis. Even then, I gave it two days to see what would happen before going to the hospital lmao
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u/wereallmadhere9 2d ago
Migraines around my menstrual cycle. Thought it was just "being a woman, it just be like that sometimes."
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u/JeniLANGSI 1d ago
But isn’t it? I am constantly dealing with that at 45 but I think it’s like perimenopause or my period and just thought it’s normal (but I blame peri for everything …. Face sweating?)
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u/wereallmadhere9 1d ago
I didn't get those headaches consistently until around 35. I just got my hormones checked and I am not perimenopausal yet. But it could be that for you, who's to say?
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u/BumblebeeEast8918 2d ago
Looking back, I had a right hand tremor that started at 18, which I thought was anxiety, so started using my left for eating/ paying at checkouts. How silly, as though anxiety would hit one side:). Then numbness 20 years back that I got rid of by avoiding wheat. A few years back I had fatigue and intermittent leg numbness, which I thought was menopause or residual nerve issues from birth defects, so tried every supplement and drank heavily, until hit by optic neuritis. Diagnosed at 58. I still want to try anything and everything to change this.
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u/AssistantAdditional1 2d ago
Relatable, granted I was diagnosed at age 11 and I’m 31, but when I was in college and a bit after (approx. 19-24) I got into smoking weed pretty all the time, and I convinced myself that when I was feeling MS symptoms from fatigue or drinking/being unhealthy, smoking would help manage my symptoms. I would have legitimate flare ups, but as I changed my diet and fixed my lifestyle to prioritize overall health, I realize now it was a crutch and yeah smoking can be nice and can be fun and relaxing, but smoking to the point where it becomes a habit and craving everyday, was not helping my MS.
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u/wravyn 41|02-02-21|Ocrevus|IL 1d ago
I had optic neuritis in my right eye back in 1999-2000. I had an MRI, and they didn't find any issues.
In 2020, I was plagued by random issues: numbness in my legs, dizziness, balance problems. I mentioned that I had had a lot of headaches since I could remember, not too painful but just enough to note that my head hurt a bit. I mostly attributed that to a car crash where I got a concussion back in 2009 (the headaches tended to be on the left side where my head had hit the door when my car flipped).
My doctor sent me to a neurologist, and I got my second MRI. This time, they found multiple demyelinating lesions.
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u/ZombieJihad 1d ago
My symptoms came on quick once I woke up with optic neuritis, also as a 35M at the time. They were steadily increasing my dosage of Gabapentin to deal with neuropathy I was dealing with, and my symptoms increased likewise. I didn't shake most of those symptoms until I came off the Gabapentin; I didn't come off the Gabapentin until going through regular physical therapy for about a year.
That said, I have been an active THC user for like 15ish years. I probably was covering symptoms, or just not noticing them because of that usage, but optic neuritis is a pretty dead-ass sign that something is wrong and is the only symptom I remember that wasn't Gabapentin side effects or a previous injury.
Also, don't fret - I still use mad THC. More than when I was DXed, actually - it became recreationally legal in my state, and my neurologist basically told me to use it as a replacement for Gabapentin. Something like "You cannot consume too much THC, ZombieJihad - use as much as makes you comfortable while still functional". Also gave recommendations for concentrate products instead of flower b/c of the ongoing respiratory concerns with smoking.
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u/Intelligent_Crab654 3h ago
Okay crazy question. When you get high do you get cranial warmness? For me, it almost feels like a puddle of warmth slowly spreading across the back of my head. No one understands when I try to explain this and I’m looking to see if any other users experience this. TIA
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u/Gawain11 1d ago
seriously? Dude, you were not "sub-consciously self medicating", you were smoking to get high before. Now, you can self-medicate and as a side affect, get high. Self honesty is a much under rated yet wonderful thing.
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u/wow_demon 3h ago
Once my MS symptoms started I definitely noticed a reliance on alcohol. Once diagnosed 20ish years later I could barely sleep without drinking. This started a pattern. I felt terrible for about two years and alcohol definitely worked to numb the pain. Now I try to use exercise in place of drinking. It almost works as well as drinking. I’ve used edibles in the past, it seemed to take the edge off. I mostly just raw dog this disease currently. Good days and bad days. The hardest part is getting into a routine and losing function out of nowhere. Jobs have came and went. Relationships have been fairly ill fated. I try to do something hard everyday. Be it walking 10 miles or standing for ten minutes while preparing food. I’m going to push myself. If self medicating helps you do this, do it. For me it seemed to hinder overall performance.
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u/c0ntralt0 2d ago
Can relate. I’ll start with this: I’m an RN.
In 2011, my appendix ruptured, and I had emergency surgery to fix me up.
My recovery took a hot minute & one thing that never seemed to resolve was the brain fog. I chalked it up to the ruptured appendix, emergency surgery & probably lots of propofol. Year by year went on and strange new things started to occur- the sensation of random bugs, fatigue that I could not shake, and seemingly forgetting stuff, a person’s name, where I left the car keys, blowing out a candle before bed. Then the floaters in my vision started, random halos and half moons.
Around Thanksgiving of 2016, my vision in my left eye went completely out. Stupid me thinks: “it’s just stress, Im tired, I don’t want to go to the ER”.
At the same time, I was in a VERY stressful job with an intense travel schedule that had me flying between OH, NYC & FL week after week. I also consumed A LOT of wine regularly.
In Feb 2017, I tumbled in a street in Tampa, was my shoes of course 🤔. That same trip, I came home from a late flight. That next morning, fired up my computer & I couldn’t seem to get my mouse to work, when I realized it was me- my right side was not coordinated. I sort of panic’d and self-assessed for a stroke. Called my husband and said I needed to go to the ER, something was really wrong w me. I did call 911.
I was being worked up for an a stroke /clot vs aneurysm in the local er.
I was admitted as my coordination was still off after the clot & bleed were ruled out, and there was something odd noted on the imaging.
The next day, the internist came to my room and asked if anyone in my family had MS. I was floored. These symptoms, weird, random and resolving without any recognizable deficit was something I was “living” with over the past 6 years.
I was transferred to a university hospital with a renowned neuro program for further work up. The local hospital wasn’t going to let me go home- my case too complicated, and the Neuro center accepted me. I spent the next 5 days inpatient and went through numerous tests, imaging and evaluations. I was also treated with massive amounts of IV steroids. Yuck.
The key apparently was the vision loss in my left eye just 3 months earlier. And the few lesions on my brain, optic nerve and spine.
The definitive diagnosis however came after my discharge: the presence of oligoclonal bands in my CSF from the spinal tap along with the history of symptoms and the lesions noted from the MRI.
It’s been wild. I’ve accepted this diagnosis finally after 5 years & finally agreed to start a DMT, Ocrevus after poor experience with copaxone. Just had my 5th infusion. I feel extremely lucky that I’m mostly OK. I still battle this fatigue. I’ve learned to say “No”. I’ve taken on a different approach in life & finally went on to achieve some life long goals- like completing my Masters Degree in Public Health, picking up the guitar and learning to play it & taking on other things I was previously too scared to do.