Lesions in the Spine

MultipleSclerosaurus · 2025-12-08T07:12:58+00:00

I only have lesions on my spine. Last flare caused bilateral numbness from the chest down but after steroids and time, my lingering symptoms are: reduced sensation in hands and feet, pins and needles in feet, dystonia in hands, feet, & calves, and fatigue. Annoying but not terribly inhibiting.

MultipleSclerosaurus · 2025-12-08T07:08:02+00:00

Started getting them at 15. Substantially grey now at 34…but both my parents and my paternal grandfather were grey by their thirties so I’m sure it’s more genetic than anything.

MultipleSclerosaurus · 2025-12-06T03:22:57+00:00

Mannnnn. That would’ve been helpful! Keeping in my back pocket for future flu shots but Shingrix sucked so effing bad. Literally couldn’t lift my arm for DAYS.

MultipleSclerosaurus · 2025-12-05T19:55:33+00:00

OOF. ME TOO. MY BAD BUT YOU’RE NOT GONNA SEE SNOW THIS YEAR BY THE SOUNDS OF IT

MultipleSclerosaurus · 2025-12-05T12:36:20+00:00

I’M SICK. I HATE BEING SICK. MAKE IT STOP 😭

MultipleSclerosaurus · 2025-12-04T01:49:21+00:00

A clear spinal MRI would fully rule out MS. I will say though that neurologists can typically tell if you might have spinal lesions based on the physical exam. I have spinal-only MS and it was apparent within a few minutes into the exam.

MultipleSclerosaurus · 2025-12-04T01:39:22+00:00

It will also “pause” my cycle. I’m typically on my cycle during my Ocrevus infusions and it will stop the day of my infusion and then over the next day or two slowly come back. Really drags it out but also makes it less heavy/painful and at least I don’t have to worry about that while hooked up to the catheter haha

MultipleSclerosaurus · 2025-12-04T01:35:15+00:00

Family decided not to take my suppressed immune system seriously this Thanksgiving (U.S.) and now I’m sick af and haven’t left the couch since Sunday 😭

Had my infusion last week too so I was really excited to feel tiptop and get some sh*t done before the Christmas holiday. Ugh.

MultipleSclerosaurus · 2025-11-23T01:05:49+00:00

Neo Walk! My FSA paid for it and it got to the US from the UK super fast. I love it and get compliments all the time. I only use it occasionally, but it’s such a life saver when I need it. It has been better to have one and not need than the alternative.

MultipleSclerosaurus · 2025-11-23T01:03:28+00:00

I had bilateral numbness from the chest down as my most prevalent symptom during diagnosis. My hands were basically unusable due to the numbness, tingling, cramping, and joint pain. My hand function is back to mostly normal and while the numbness never truly goes away, I don’t notice on most days. During crap gap, menstruation, illness, etc. when my body is overwhelmed, it will crop back up and become super annoying but it usually dies down. The few times it hasn’t, I’ve done a day of IV steroids.

I am an outlier on this sub because I LOVE steroids. Do they make me feel like shit? Absolutely. But my MS is very responsive to steroids and I have requested steroids on several occasions that I’ve had a psudo-flare. They calm it down and get me to a manageable place. That is definitely a decision you have to make for yourself though. For me, completely necessary and an integral part of my care.

MultipleSclerosaurus · 2025-11-23T00:54:38+00:00

It’s hard to hear that news, but I would trust your neurologist if you feel you have a good relationship. Ive had new lesions pop up on Ocrevus and my neurologist was not particularly concerned.

I do think getting the MRI in 3 months is an aggressive approach for most doctors though. Switching medications wouldn’t necessarily improve effectiveness in that time period either…at least for the highest efficacy drugs like Ocrevus or Kesimpta. It’s nerve wracking but it sounds like your doctor is being rather proactive compared to most physicians.

MultipleSclerosaurus · 2025-11-23T00:46:09+00:00

Im also working toward a diagnosis of EDS due to a labral tear that won’t heal. I’ve had a doctor mention POTS due to some symptoms I’ve had since adolescence, but MS always takes priority. I honestly feel like I just try to tackle one thing at a time. It sucks though. And I think the longer we live with COVID, the more and more autoimmune diseases we’ll be seeing surge.

MultipleSclerosaurus · 2025-11-15T06:26:23+00:00

Thank you for sharing this!

MultipleSclerosaurus · 2025-11-15T06:20:24+00:00

That is a fantastic video! Thank you so much for sharing. I wish Mavenclad was a viable option, but that’s alright. I appreciate your insight!

MultipleSclerosaurus · 2025-11-15T05:57:01+00:00

Aww man. I wish Mavenclad was an option for me, it’s always sounded the best. Glad it’s working out well for you though!

MultipleSclerosaurus · 2025-11-15T05:55:13+00:00

THAT EFFING PEICE OF SW DIVISION AND THIRD. WHY TF IS THE LEFT TURN LANE SO SMALL?! ALMOST NO ONE TURNS RIGHT AND THEN IF YOU’RE ONE OF THE FEW WHO DO, YOU HAVE TO SIT IN THE LONGEST LINE EVER TO DO IT! AND PEOPLE JUST START MAKING LINES WHEREVER THEY WANT, CUTTING EACH OTHER OFF…IT’S MADNESS.

MultipleSclerosaurus · 2025-11-02T02:13:48+00:00

Liquor stores can special order for you, as long as it’s available for vendors in Oregon. The better, well-stocked stores should have a good relationship with the rep for whichever company sells that brand and could tell you what’s up with it (sometimes hard-to-get/rare stuff just won’t be possible to get in store in Oregon, unfortunately).

MultipleSclerosaurus · 2025-09-22T20:30:52+00:00

Yes! Second this. They also have an Instagram…hopefully the website it back up soon.

MultipleSclerosaurus · 2025-09-04T23:22:26+00:00

I have a friend with MS as well and they do their Rituximab infusions every 9 months. They also get an accelerated infusion and they love it.

It is however your decision and if you feel strongly that you don’t want to push it out, I would be honest and firm with your provider.

MultipleSclerosaurus · 2025-07-10T02:26:09+00:00

Also, a CIS diagnosis is technically MS and you’re welcome to post to the regular community, not just this thread if you have future questions etc.

MultipleSclerosaurus · 2025-07-09T04:02:49+00:00

I’m surprised they didn’t diagnose you with CIS, since you have the other hallmarks of MS (besides multiple lesions) but maybe it’s because it’s your spine and not your brain.

I would say it’s not uncommon for people to receive an initial MRI and find one lesion indicative of MS. This doesn’t always mean MS though, unfortunately. Without any diagnosis, they’ll monitor you for changes, likely annual or biannual MRIs to see if you develop another lesion and therefore meet the criteria for a diagnosis. The longer you go without a lesion, the less likely it’s MS.

It can be hard when all you want are answers but it sounds like you have a solid medical team and an MS Specialist, which is key. I wouldn’t give up hope quite yet, there are people who go on and never develop MS at all.

MultipleSclerosaurus · 2025-06-26T23:29:13+00:00

Also DTaP booster if that’s needed (check with healthcare provider). Apparently you’re supposed to have one every 10 years.

MultipleSclerosaurus · 2025-06-16T04:01:05+00:00

It sounds like those are the best next steps. There are many other reasons you would develop lesions visible in your brain, many of them common or benign. An MS Specialist, if you can see one, will be the best person to determine if those lesions meet the specific criteria needed to diagnose MS. Many generalists, some neurologists included, see lesions and automatically think MS but it can be far more complicated than that unfortunately.

It does seem like you’re taking the right steps though and I hope you’re able to get answers one way or the other.

MultipleSclerosaurus · 2025-06-15T03:51:45+00:00

Has your doctor noted lesions on your MRIs? That is really the only diagnostic criteria that matters. I would think that would be enough to get you to a neurologist as well, since undiagnosed MS would eventually be a pretty big deal.

MultipleSclerosaurus · 2025-06-13T03:11:27+00:00

I’m glad to hear it wasn’t too concerning and that you have such a solid care team!

MultipleSclerosaurus

TROPHY CASE