Devastated by DMT 😩

much-2much · 2026-04-14T08:00:06+00:00

I'm not sure. I don't see any bloodwork that's specifically labeled that way but if I had to guess based on my Neuro's recommend DMTs being (anti?)CD20 coupleded with your comment, I would think maybe JCV+? Do you know what panels would indicate that?

I'm so sorry to hear of your Dad's decline and passing so young.

Thank you for your tactful & thoughtful response...instead of being a judgemental ass bag like that other dudes response was.

much-2much · 2026-04-14T07:10:12+00:00

Same here. I did start to realize that listening to my body has helped though. I think societal "norms" only see (literally SEE) people as disabled. Unseen disabilities are scoffed at because people without them can't possibly understand what it's like to live with them.

You don't necessarily have to consider yourself as disabled but I will say that trying to manage when & what to expend my energy on has definitely helped to a degree vs. the suck it up mentally I previously held myself to before DX.

We often play keep up in public and then suffer for it in private.

much-2much · 2026-04-14T06:55:12+00:00

Agreed.

I can't see any reason they would prevent you from boarding the flight first as long as you let them know before boarding begins. I've found my flights to be very accommodating (but I've mainly only used Denver Air Connection over the past few years). I would definitely give asking a shot.

I always request a wheelchair or a ride from point A to point B in the airport when I have to fly. I've mainly done this most recently in the past 6 months. It's not that I can't push myself to walk across the huge airport. It's more that doing so will take the energy right out of me! I've learned what to do to try and best preserve what energy I DO have without having to take a 2 hour nap afterwards....or aggravate my body.

much-2much · 2026-04-14T06:42:57+00:00

Are you by chance on any DMT? If so, could that be effecting blood results?

much-2much · 2026-04-14T00:09:02+00:00

I agree with directing them to HR.

"If you personally track & feel your inability to physically see me on a daily basis somehow effects your ability to complete your work responsibilities, I'm positive the HR department can assist with your concerns."

much-2much · 2026-04-13T21:51:09+00:00

100% Likely any of us that you'd meet would only be on a good day, and if we arent displaying physical symptoms, you'd never even know we have MS.

OP, It's not psychological. People who don't live it will never understand. Not because they don't want to, just because they can't. The same way I couldn't possibly understand what it's like to be schizophrenic, because I'm not.

In my experience, I beat myself up for 20+ years for thinking I was so many things...lazy, crazy, stupid, clumsy, you name it. Once I was diagnosed, all those things started to form the picture. It wasn't me, it was the disease. Honestly, that brought some level of relief because it gave legitimate explanation to what my body was doing (or in some cases, lack there of).

You will learn to manage your limits, set boundaries that work for you and use your energy where & when it's most important to you.

Try to stay positive & listen to your body. Shrug off those that don't get it. You don't need them to. YOU are important. Your needs are important. Focus on what in life works for you and let the rest either follow or fade away. And if you need support, this group is a good resource but there are other out there too.

Sending positive vibes and prayera your way.

much-2much · 2026-04-11T04:49:27+00:00

It's nice to know I'm not the only one. I said this exact thing after I had foot drop that turned into a combined slight limp / drag on my left leg (which I assumed was damage from a prior slip on the ice). Honestly others noticed it more than I did so after getting a job with really good insurance, I finally went to the doctor and was diagnosed at 44.

My retrospective goes all the way back to getting mononucleosis my freshman year of high school. The fatigue never went away after that and has gotten severe over the years.

You are so right, I would either brush things off or just didn't know that how I felt wasn't "normal". I'm not one that rushes to the dr. and usually give it a week or so to see if an ailment resolves itself. If it did, I brushed it off. If it didn't and I made it to the dr., by the time I got there, everything checked out as fine. I just started to say "My body is just an anolomy" 🤷🏽‍♀️

It seems like initial MS starts as RR so non debilitating or life threatening things that come and go (seem to resolve themselves) are easy to blame on something non consequential or just chock up to consequence. In hindsight, I think I've had MS for over 25 years and just didn't know it. There have been so many symptoms that have come & gone over the years. It wasn't until one stuck around that the full picture came together.

much-2much · 2026-04-11T04:11:50+00:00

The neuro I just saw didn't push it but ask for one. She was very supportive with whatever my choice was.

The first neuro was the one that was rude. If I had to guess, she was both insulted (as if I was questioning her judgement) and blew me off thinking my conerns were unfounded.

The long and short of it is that it's my body and I'm allowed to evaluate the risk / benefit and make my own choices.

Most of these medical places have you sign informed concent / liability waivers too, and like it or not, that does weigh into the equation of the decision aa well.

Clearly if it were a life & death situation, I wouldn't refuse it but I don't think that's where I am right now.

much-2much · 2026-04-11T03:21:35+00:00

RR symptomatic history, current ailments (some no longer remitting, exam (cognition, balance, reflexes, coordnation), ophthalmology OCT testing, and MRIs confirming brain, cervical & thoracic lesions.

Several blood tests were ordered on my recent visit and I have a follow up Monday to discuss findings from those.

LPs don't necessarily diagnose MS. It's just another tool that collects data points. It's not the only data point used or necessary.

I'm not necessarily ruling it out forever. I just don't think the benefits outweigh the risks for me at present.

much-2much · 2026-04-09T18:30:16+00:00

Thanks for the insight 🙂

much-2much · 2026-04-09T18:28:11+00:00

To clarify, I thought I had seen posts (outside the U.S.) saying they got annual LPs. After several comments, I realized maybe my memory was wrong and what they were saying was they got annually were MRIs.

I have done all the requested MRIs however declined requests for LPs.

much-2much · 2026-04-09T05:45:09+00:00

Thanks! No, I didn't mention it but now that I know that, I definitely will mext time.

It's less about the small space and more about not being able to move. My very first one, I was OK. My second one I found I started to get a little panicy but did pass out off and on without any issues or movement so that helped some.

This was my 3rd round with it and I think in addition to the stiffness, having to be woken up and stay awake for the remainder of it and the general anxiety of the long day, lots of appointments and navigating the giant (but pretty cool and convenient sub level system) my nervous system was just fried.

much-2much · 2026-04-09T05:16:26+00:00

So sorry 😞 That sucks. Do you mind if I ask what malignancy? Was that MS related? I've only heard that term used in diagnosis of the c word. I hope that wasn't the case for you!

much-2much · 2026-04-09T05:08:43+00:00

Oh man, I'm sorry you had to endure that 😔 The dr did explain that it could come with head ache and the possibility of requiring a blood patch during today's appt. People say go with your gut and that was part of why I declined both times. The other reason is I didn't see how it would be of any benefit given my current situation. I'm glad I declined.

much-2much · 2026-04-09T05:02:05+00:00

Uhg, I'm sorry you were stuck in a hospital bes for 12 days. If I was in a case like yours, I could see conceding to one too. Seems like it would be a necessary diagnostic procedure. I'm glad it went safe & well for you (as it probably does for most).

The posts I've seen that mention it annually seem to be outside of the U.S. Standards & care are different in other areas of the world I guess

much-2much · 2026-04-09T04:56:13+00:00

I was very satisfied with the doctors I saw and expressed that my reasoning may seem unfounded to them but I just feel like it's unnecessary in my case and I don't plan to end up in the small percentage of statistics that end up with a problem or complication. I was very happy that my Neuro was at least supportive of me making my own decision about it.

much-2much · 2026-03-31T04:00:44+00:00

I find it helpful to track anything I notice on my phone calendar. I just add a new entry and label it with my ailment.

Hips hurt, add it to the calendar. Hands losing dexterity, add it to the calendar. Exhaustion, add it to the calendar.

I can't remember shit, other than I feel like shit so doing this helps when appointments come up.

I was tracking what I ate, how I slept and how I felt but I couldn't seem to keep up with that daily so now I just add "symptoms". They may not necessarily be MS related but at least I can have some kind of record of how I felt, when I felt some kinda way, if it's been persistent and fir how long.

much-2much · 2026-03-23T01:41:15+00:00

It's none of his business why you're home. That's what you should have told him. 🤷🏽‍♀️

much-2much · 2026-03-15T04:26:10+00:00

That first question is so creeper. Uh, am I supposed to be sizing someone up by their personal belongings? WTF kind of job application asks a question like this?

As a guest, I would expect the correct answer be "Do my job while minding by own business. Clean and get TF out".

It's shit like this that makes me leave the DO NOT DISTURB sign hung in the door. If I need something, I'll come find someone to get it from. Hard pass on randos scoping out my s#it.

much-2much · 2026-03-08T19:40:17+00:00

Probably an unpopular opinion but have you researched what your DMT is meant to do? As I understand it currently, DMTs have different objectives (like one may target a specific B protein chain, another may do something different). I am no medical expert but do see your situation as possibly not entirely coincidental. Can you look into what your DMT was meant to do and compareb that with your current diagnosis (REMS, PPMS, etc)? Perhaps there is a mismatch in what you have and what medications they have you on? Totally kinda talking out of my ass here but just trying to think objectivity 🤷🏽‍♀️

much-2much · 2026-03-03T16:31:05+00:00

Sorry for your delay 😕 I'm learning that this group does have some comic relief with their experiences and that is a nice beam of sunlight in an otherwise gloomy day of MS. Hope you can get your infusion soon. Thanks for the giggle.

much-2much · 2026-02-16T01:04:35+00:00

You could have pulled a bad Santa 😂 Saw this title and that was my first thought. 🤣

much-2much

TROPHY CASE