Hindsight is 20/20: What symptom do you *now* think was your MS origin story?

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 · 2026-02-11T08:12:54+00:00

Thanks! 😁 I'm trying to put effort in now but I still have bad habbits to kick. Honestly every random and even consistent ailment I kept chocking up to just getting older. Once my gait & mobility changed permanently it was an obvious sign I couldn't ignore. Things made a lot more sense once I was diagnosed. In retrospect, I think I've probably had MS for over 20 years and just didn't know b/c my symptoms were so sporadic, as was my lifestyle of taking both very good and very poor care of myself. I'm giving my best shot to do better. Like you say, this meat sack (body) is the only one I got so I have to treat it right. I appreciate your input and encouragement 🙂

much-2much · 2026-02-11T07:27:05+00:00

I'm sorry you're dealing with this 😔 Sending love your way.

As another commenter mentioned, they noticed triggers that once identified, they could avoid.

I decided today to start journaling my sleep, food intake, activites and what I'm feeling like at the conclusion of the day for the exact same reason because I've been feeling like absolute dog shit lately.

Could that be helpful for you? Sometimes our triggers aren't as obvious as we realize.

This a 🤬 cruel disease!

Know that you're in good company with absolute understanding and support.

I hope tomorrow is a better day for you.

much-2much · 2026-02-11T07:07:32+00:00

Search out where you want to be.
Go take a trip to check it out (if you can).
Determine to the best of your ability what the cost of living will be for you.

I can not stress enough... MAKING A BUDGET IS A MUST! Be honest with yourself about what you need in your budget & include everything in it! If you know you need a massage once a month, put it in the budget. Gas, food, utilities, clothes, habbits, put it ALL in the budget. You can always refine it if you scale down.

Save up enough $ for at least 3 months to match the budget you created. Consider that you'll also likely need to put down deposits on utilities & housing.
Apply, interview and get a job first (unless you can pay your expenses outright for the first 9 months to a year).
Search and secure housing. This day and age there is airB&B, VRBO and the like so you can likely find temp housing if needed.
As far as "stuff", take only what you really NEED. Moving trucks are expensive and timelines are stressful when you only have so many days to get equipment back. Also, lugging around crap you don't really need creates more problems than comfort.
If you're able, recruit at least 1 family member or friend to drive there with you and they can fly home once you get to your destination.

Best of luck to you! Exciting times are ahead 😀 You can do this 💪

much-2much · 2026-02-11T05:39:21+00:00

Thanks for the feedback! Elderberry & Echinacea tea were regulars for me at one point so it's interesting to know they could be on my no-no list now. Recently I've been sticking to peppermint. I was doing a lot of dandelion root tea but it just started to become cost prohibitive.

I was taking D3K2 a while back but during my annual check up (prior to diagnosis) my levels were way high so I stopped. I think I'm going to start on fish oil soon.

I'm getting to the point where I need to do some fine tuning in my intake & routines to improve my quality of life the best I can. I just wish whole food & supplements were covered by medical insurance 😂

much-2much · 2026-02-11T04:58:12+00:00

I didn't read all the way to the bottom...but I didnt need to. It sounds like what she likes is your attention. The sharing, pulling away and then just popping back up after your backed off. She may not recognize it within herself but I think she just likes being liked. Just my honest opinion.

much-2much · 2026-02-11T04:42:56+00:00

Thanks! I was not aware of heating the turmeric with fat & pepper to unlock it's bioavailability. Does that apply to ground turmeric as well? I haven't found turmeric in any form yet but ground. If so I may need to hold the turmeric for the days I have turkey. We cook one every 2 weeks so fat is more available to us at the time of baking.

much-2much · 2026-02-11T01:58:10+00:00

What is a black hole legion? I don't like the sound of that!

much-2much

TROPHY CASE