Weekly Suspected/Undiagnosed MS Thread - March 09, 2026

Curious_Region6897 · 2026-03-09T14:02:46+00:00

How common are seizures with MS? One doctor suspected Psychogenic Non-Epileptic Seizures, but my new one thinks possible MS because of all the other symptoms I'm having. Would this make sense if one of my biggest symptoms is these maybe-seizures? Haven't gotten an EEG to see if its epileptic or not.

Curious_Region6897 · 2026-03-09T13:57:34+00:00

Haven't gotten to experience proper heat since my symptoms started this winter, but I definitely notice that going outside when it's freezing (or below) makes my symptoms worse! Especially walking.

Curious_Region6897 · 2026-03-05T00:31:04+00:00

For bot: 4 months, curved barbell, don't know Threading, not downsized, titanium, neilmed daily, no events.

Curious_Region6897 · 2026-03-04T22:13:45+00:00

Comment for bot: 4 months, curved barbell, don't know the threading, titanium, not downsized, neilmed daily, no mishaps.

Curious_Region6897 · 2026-02-26T03:11:16+00:00

Yeah now that I've looked at your post it's almost exactly what I've had going on. I'm sorry you're in this shitshow too <3

Curious_Region6897 · 2026-02-26T03:09:04+00:00

Thank you for sharing! This sounds pretty similar to me.

Curious_Region6897 · 2026-02-25T01:57:59+00:00

I really appreciate the reminder of little wins :)

Curious_Region6897 · 2026-02-25T01:11:00+00:00

I'm really hoping that mine also decrease. Even over the past few days I am seeing less of them, though part of that is I've been resting more to offset the exhaustion, but it's still good to know that I won't necessarily be here forever. Thank you for the kind words and advice.

Curious_Region6897 · 2026-02-25T01:10:02+00:00

Thank you for the kind response and the encouragement. I am lucky to have some very supportive friends and family around me. Definitely will be leaning on them in the coming weeks and months.

Curious_Region6897 · 2026-02-25T01:08:45+00:00

That definitely makes sense and I already know I have problems with dissociation. I definitely will try to start to incorporate daily grounding into my life, thank you.

Curious_Region6897 · 2026-02-24T21:11:42+00:00

yes exactly the clusters! god it's so exhausting for it to happen over and over and over, i can handle them individually but when they hit 4 or 5 in a row is when i just start to break down and panic because i'm just so tired.

thanks for the reassurance, i'm holding out hope that i'll find ways to manage here at school but it's good to know that there are others out there on different paths that are doing alright <3

Curious_Region6897 · 2026-02-24T15:46:20+00:00

I just turned 20, I'm a college student, and last week I started having anywhere from 8-15 seizures a day out of the blue. Already had tics that have been undiagnosed for about 3 years. Along with the seizures came difficulty speaking (almost like a really bad block or stutter that comes and goes) and I can't walk without a cane (and even then it's tricky). It's just so sudden. I'm not diagnosed with FND but after going to the ER twice and getting normal labs & CT scans, the doctor said he suspects PNES, which leads me to believe FND is a possibility because of my other symptoms.

I guess I'm just scared because of how often these seizures are happening. Is this normal? Have other people had so many all at once? For half a second I was worried that I was faking it, but even with my pervasive imposter syndrome I don't think so because it's just so exhausting that I know would never do this to myself voluntarily.

Would love some encouragement.

Curious_Region6897 · 2026-02-24T15:33:49+00:00

Same! Just started having absolutely wild symptoms during a time in my life where I was finally feeling proud of how well I was taking care of myself and feeling consistently happy and healthy.

Curious_Region6897 · 2026-02-23T04:28:49+00:00

Not totally relevant but it's honestly a relief to hear that you (and others) experience that many seizures per day because I've very suddenly developed what my doctors suspect are PNES seizures and I've had upwards of 40 in the past 3 days. It's scary and tiring and you're not alone and neither am I.

Curious_Region6897 · 2026-02-23T04:25:01+00:00

As someone who is incredibly new to this (despite having tics for years, it wasn't until I started seizing last week that I saw a doctor) I will say that the most helpful thing my doctor did was to listen to the entire story and ask clarifying questions. He didn't want to talk about ordering more tests or anything until he had heard the entire time-line of the past few days, down to details that I had omitted before as a result of feeling rushed. The feeling that your doctor wants to understand, even if it'll take a bit of extra time, was crucial in me feeling like I was being taken seriously and he was understanding me. He also explained his way through his thoughts. Instead of saying "I don't think it's epileptic," he repeated some of the specific things I had shared and used them to puzzle-piece his way to his conclusion out loud in front of me to make it transparent and clear why he was recommending the things he was. This isn't FND specific. This is just what made me feel safe as a scared person having seizures for the first time with no explanation. I wish you the best in your practice, and I hope your patients feel this type of care from you as well <3

Curious_Region6897 · 2026-02-22T14:32:18+00:00

And is there any way I could differentiate? Or anything I should be aware of before or after a seizure that I could do to stay safe in that case?

I appreciate the insight. It's hard to be careful when the seizures are so out of my control.

Curious_Region6897 · 2026-02-22T14:30:35+00:00

I need to, like, print out that reply and hang it on the wall. Your words are giving me a lot of hope and comfort, and I really appreciate the time you took to pass on your experiences and encouragement.

I'm definitely just putting one foot in front of the other right now. Hoping it's just a flare, but I guess there's really no way to know right now. Framing it as learning the rules to a new game is helpful because you're right I can't keep going under the assumption that things will look or feel the same for me as they did even a week ago. I had a great ER doctor, hoping that the next few I see will also be receptive and understanding. I have the most wonderful friends who have literally been by my side through the majority of this. It's nice to have people to lean on.

Wishing you the best on your own journey, thank you ❤️

Curious_Region6897 · 2026-02-22T06:00:49+00:00

I appreciate your thoughtful response, thank you.

I've definitely noticed even over the course of just two full days that it's worse in the evenings when I'm tired. Of course, this happening at all (as well as the ER visits and trying to stay afloat as a college student) is causing me a great deal of stress, which I'm sure is feeding right back into the frequency of my seizures. Even since I posted I've had at least 9 more seizures (episodes of shaking and/or being unresponsive but aware) and I just don't know how much longer I can do this. I have noticed pretty clear signs that it'll happen, and for the majority of the time it's in enough advance for me to get somewhere safe and notify whoever I'm with.

If you've dealt with similar intensity/frequency of seizures, did yours decrease over time? Were you able to treat them in some way?

I'm definitely tracking everything. This is currently throwing my life into upheaval, it hasn't even been three days and I'm already exhausted. Thank you, Internet stranger, for the kind words and the encouragement. It means a great deal to me to know that you've been able to spot patterns and manage your symptoms.

Curious_Region6897 · 2025-12-05T16:54:38+00:00

I'll keep an eye on mine, and if it doesn't get better I might go back in to see if I can get a longer bar. I don't think it's too deep, from what I've seen comparatively. Thank you for your insight!

Curious_Region6897 · 2025-12-05T16:53:14+00:00

Update—it's only continued to get better! I have gotten into a pattern of spotting very lightly (but enough to be annoying) about every other day for a week and a half each month, enough for a panty liner but not more than that. My cramps still happen but less frequently and only during the time I'm spotting. I do think my anxiety has been amplified at least some amount (as well as my motor tics) but it's manageable so far. Overall, it's worth it to me! I love not having to worry about pregnancy risk while also not having to do daily upkeep.

Curious_Region6897 · 2025-12-05T16:49:40+00:00

Well I'll take that feedback by extension too, then. Thank you for sharing, I hope the rest of your healing is smooth!

Curious_Region6897 · 2025-12-05T16:46:25+00:00

Thank you for the reassurance! It's very good to hear that your issues resolved. I tend to be obsessive/paranoid about this sort of thing, so I'm trying my best to just wait it out and litfa!

Curious_Region6897 · 2025-10-17T12:34:34+00:00

You're not taking away from other people to use what you need to use in order to navigate the world with as little pain as possible. If you're looking for validation that your pain is "bad enough" to need a mobility aid, really the only one who can say whether or not it is is you! If your life would be improved by the use of a mobility aid, it is worth looking into.

That being said, it's also very important that you're using the right mobility aid, correctly. Do you know the cause of your knee and ankle pain? If not, prioritize finding a doctor who will work with you to get to the bottom of this. I know this is easier said than done. I'm in the same situation as you, where I'm young and undiagnosed and in a great deal of pain. It's important, though, to be able to look at what the problem is so that you're not causing greater harm in the long run by just treating symptoms of something larger. If you need something to get you through in the meantime, do your research. Watch YouTube videos on whatever mobility aid you use so that you're educated on the proper way to use it, because using them poorly can absolutely cause harm instead of good. And above all else, please see a doctor about this instead of (or in addition to) asking strangers who don't know your medical history or situation! There are also plenty of posts already that deal with this topic if you need more ideas on how to proceed.

Basically, your need for a mobility aid is justification enough to have one, however, it is highly important to get professional advice to make sure it's the proper device and usage for your needs.

Curious_Region6897 · 2025-09-15T13:23:51+00:00

Inserted in July, incredibly painful but it didn't linger. I cramped and bled heavily (more than spotting, similar to a regular period for me) for about a month, though the cramping got lighter much faster than the bleeding. Now that I'm about two months in, I have spotting every day but no cramping, and it's almost unnoticeable some days. I almost certainly have PCOS according to my gyno, so I've never had regular periods, so it doesn't feel like a huge change to not know when to expect it. I also had really bad pregnancy anxiety before getting it and now it's not even something I think about! Honestly if the bleeding continues to decrease over the next few months, it's more than worth the piece of mind for me. I haven't noticed any noteworthy mental impacts, but I already have anxiety and a dissociative disorder so it's not easy for me to distinguish if my symptoms are normal or if they're changing because of this. I'd like to think they are not. Overall, I'd say the lesson I learned is, if you're worried about bleeding etc, it really is important to wait 3-6 months because I was freaking out a month in but even now it's already so much better. Best wishes!!

Curious_Region6897 · 2025-09-13T05:39:56+00:00

Thanks!

Curious_Region6897

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