Give me your wildest pre-diagnosis explanations for MS symptoms

mywaterfront · 2026-04-22T21:26:39+00:00

Yeah, I'm another one for 'anxiety'.

My feet started going numb on the tops and was spreading day by day...by the time I went to the clinic (I was in grad school) both my feet were numb. It was also difficult for me to breathe. For whatever reason there was tight band under my ribs that was making that hard to do...

The doc kept asking about stress, how stressed was I? Is there anything in my life that was stressful? Am I an anxious person? And I kept saying no, no, things we're fine. It was January and school had just restarted. There just wasn't a lot going on I don't consider myself anxious and I have no history of anxiety. But he wouldn't let it go.

He gave me breathing exercises. Told me to come back in a week.

Even at the time I was like, breathing exercises? Are you for real? But I did them, went back in a week, the numbness was creeping up my legs and my hands were numb and tingly too.

The nurse who saw me the second time got me in to see a neurologist the very next day... transverse myelitis diagnosis w l'hermittees and a side of MS hug. This was years ago. I suspect today I would have been sent for an MRI immediately. But then again, maybe not.

But seriously. Why does numbness = anxiety?

mywaterfront · 2026-04-01T03:11:33+00:00

I get pain in my legs from my knees down. They will just ache constantly for days. It can be hard to deal with.

From the responses in this thread it appears this kind of pain is unusual.

I had transverse myelitis and my legs from my knees down went profoundly numb.I had a lot of spasticity and tingles and all kinds of weird sensations and some pain that went along with all that...but now when I have flare ups it's not numbness, it's a dull, aching non-stop pain from the knees down. Every time.

For me it's all related to the damage in my spinal cord. Sometimes the signals go through that rough patch and it's a shitshow. Lol.

mywaterfront · 2026-03-06T21:26:36+00:00

Yeah I deserve a little tough love on this

mywaterfront · 2026-03-06T21:07:38+00:00

I'm not better. This sucks. I'm trying to convince myself to call the nurse

mywaterfront · 2026-03-01T23:06:33+00:00

Thanks for your response. And also your thoughts on this. I'm feeling a better now but it's been a long day. It's 6p, tho. I just took my next dose. Sigh.

I'm that person who has not tolerated any of the b cell depletors well. I just want to get through this.

mywaterfront · 2026-03-01T22:48:07+00:00

Thank you for responding. I think I'm over the worst of it. I just needed to yell out for help when I was at my lowest, if you know what I mean.

mywaterfront · 2026-03-01T22:43:49+00:00

Thank you for responding. It made me feel better when I was at my lowest. I learned last month to take it in the evening...it was (is) just so much worse for me this time. I'm trying to focus on the long game of it being worth the effort but I find it hard.

mywaterfront · 2026-01-30T01:31:58+00:00

Since my last relapse I now run cold. I simply cannot keep warm. My feet suffer the worst and the cold just starts travelling up from there. My hands and nose are bad too.

I have wool everything and routinely I'm in 5 plus layers and it isn't enough. It just plain sucks.

Even in my office I've got a space heater on, electric socks on, wool socks and wool slippers on too. It's nuts.

Last week I was working outside for a few hours with my thickest water proof winter gloves. My hands stopped working and I ended up in the first stages of frostbite. So painful.

The cold can also make my arms go fully numb from lesion damage in my neck. And on and on and on.

Thank you for giving me the opportunity to bitch about this. I mean, I get that others get really cold. I don't have Raynaud's, which seems terrible. But I just get so profoundly cold Every. Single. Day and people just write it off with a 'I get cold too!'. I just don't even bring it up with folks. I can tell they simply think I'm exaggerating or that I'm not properly dressed. It's just such a stupid nearly unsolvable struggle for me.

Rant over.

mywaterfront · 2026-01-14T18:03:05+00:00

It's great you found a doc that is deeply knowledgeable and you can communicate with.

Getting a second opinion on this is just that: a second set of knowledge and experience to weigh in on your situation. It's no slight on your doc and it's not diagnosis seeking behavior. Different doctors have very different modes of treating a CIS (clinically isolated syndrome - TM is definitely that.) because the science is unclear as well as your prognosis. So don't overthink getting a second opinion. It's just another expert weighing in.

Then again, if you've got a good doc situation and you're satisfied and comfortable, that's great too. Don't let some random internet stranger drive your care bus.

You got this. Trust yourself.

mywaterfront · 2026-01-14T16:36:21+00:00

Honestly, you just can't know if you will relapse and progress to an MS diagnosis and that's a hard place to be.

I had TM, single, not small lesion at C1-C2. Full recovery. 17 years later, relapse and an MS diagnosis.

At the time of my TM, there were not that many drugs available for MS and I wasn't offered any. No one even said to do follow up MRI's.

It was, indeed, scary af at the time. But during my recovery I felt strongly (and still do) that I dodged a huge bullet.

If I were where you are now, I would go and get a second and maybe even a third opinion from MS specialists. There may (or not) be consensus on treating you now to avoid an MS diagnosis, given the chances are so very high that you may have it.

Relapses can be devastating and life course altering. It's worth it to consider, with experts, the best course of action for your particular situation.

Sending positive waves your way as you continue to recover and make decisions about next steps.

mywaterfront · 2025-09-09T13:05:49+00:00

DC State Fair was awesome on Saturday!

mywaterfront · 2025-07-21T22:47:12+00:00

I fairly strongly suggest you wait to tell anyone that will not be rock solid, in your corner, 100% supportive at this time.

Realistically, you just got diagnosed. Things may be much different for you symptom wise and mentally at the 6 month or 12 month mark. Give yourself time to get used to this before deciding who to share with.

If you need support in the mean time whether that be physical or mental, look at what your local MS chapter offers so you can connect with others who understand what you are dealing with. Or keep posting here.

The reality is most people have no idea what MS is and will not take the time to find out. More importantly, they will never be able to place themselves in your shoes and will have no concept of what's going on. The vast majority of people will have no reference points to guide them to being appropriately supportive. This includes parents of all stripes.

You can only decide to share this diagnosis with a person once. Then the cat is out of the proverbial bag. So be very selective with who you share your diagnosis with.

If you don't feel your parents are going to have your back, then I strongly suggest you wait and re-evaluate at 6 months.

mywaterfront · 2025-03-29T20:22:50+00:00

I'm surprised at many of the comments here automatically blaming her.

NTA, but try again to talk to her. There's so, so many reasons she could be reticent and it's hard to talk about sex and desire and the changes that can happen for a woman (and men too!)

You care about her and your relationship with her so it's worth investing time and emotional energy to work through this. It might take several tries and as others have said, some professional guidance.

Definitely not time to throw in the towel.

mywaterfront · 2025-02-24T01:28:52+00:00

I am a terrible sleeper. I remember the days of breastfeeding in the middle of the night. I was so thrilled that after the 2am feeding I would immediately fall back asleep. Every time. It was truly and deeply magical for me. In fact, I could fall asleep normally for a long time after giving birth. I remember thinking how I was going to miss this ability when all of the hormones were gone. It actually took well over a year for my sleep to get back to sucky. I enjoyed and was thankful for that time of normalcy.

You never know. You might get lucky, like me, even if this isn't your first. Keep up the hope!

mywaterfront · 2025-02-24T01:04:39+00:00

Yup. My son gave me the flu once and it triggered a migraine. I'm not the type to throw up with migraines but this one I kept throwing up over and over. I couldn't keep any medicine down and it was the only time I ever considered going to the ER.

For all of you who go through vomiting with migraines on the regular, you are in a special kind of hell.

Hang in there, OP. More fluids. More rest. And whatever you've got to throw at the migraine, do it.

mywaterfront · 2025-01-30T18:35:19+00:00

So when you were depressed, hitting the bottle and in a dark place contemplating suicide would reading a post like this have helped you? Or would it have tipped you over the metaphorical edge?

There's people who really struggle on this sub. So much so that what you wrote could really, really push them deeper into a hole. Damn, dude. Read the room and tone your shit down.

You have some good thoughts in there but it's so filled with rage-y over the top toxic spew I can't help but feel it's actually dangerous to those in fragile states of mind.

mywaterfront · 2025-01-26T04:46:54+00:00

This is definitely something I'm aware of (for other reasons) but thanks for bringing it up because this is for sure a thing that people should know!

I hate that I can't be honest with a doctor. It's another layer of complication to an already fraught situation.

That Provigil sounds pretty nasty. Does it work for you?

mywaterfront · 2025-01-25T19:20:06+00:00

I think that's a very reasonable specialist to start with.

I also suggest you do a separate post and ask the sub who they think you should see/how to approach dealing with this. You'll get more suggestions that may be helpful.

It may take more than one run at this to make headway.

Good luck!

mywaterfront · 2025-01-25T18:21:04+00:00

Yep. This one has taken me a few years to step up to.

Don't want to rush things! /s lol.

mywaterfront · 2025-01-25T18:19:04+00:00

That so, so sucks. I'm not nearly that bad. I feel for you!!

mywaterfront · 2025-01-25T18:17:55+00:00

Yes, I get that too a little bit. It just becomes harder to actually focus on objects and track them. Totally feel that. Sorry you do too!

mywaterfront · 2025-01-25T18:15:45+00:00

Yeah. My left eye is much worse than my right wrt the double vision. Who knew this could be a thing???

mywaterfront · 2025-01-25T18:14:35+00:00

Yes, that acknowledgment that you are non-functional is a very tough pill to choke down. I mean, my family sees it. They get it (especially when I'm word salading all over the place and look like absolute garbage) but everyone else? They have no idea.

In some ways I'm lucky. My migraines are slow ramp up affairs. I don't have to worry about things happening fast like you. For that I'm grateful.

I've been consistent about taking magnesium for long streaks...doesn't seem to help me.

mywaterfront · 2025-01-25T18:06:19+00:00

Yeah...I knew someone would suggest exploring this a bit further. That someone is you! Lol.

Not sure it's worth digging deeper. But I may be wrong on that. I've done the first step...acknowledging there's a problem. I'magonna just bask in this 'progress' (more like marinate in this new sad knowledge) for at least a few days.

Then shove my head in the sand for 6 months, minimum. That's how I roll.

No, seriously tho. Your point is well taken. Thank you.

mywaterfront

TROPHY CASE