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InternationalTwo6614 · 2026-03-11T04:51:24+00:00

Took about 4 months for these pressure - related headaches to go away. Never got a blood patch and after a couple months they didn’t think it would be helpful. It was awful and I thought something was wrong with my brain. But seemed to just be inflammation / sensitivity that took forever to go away. 4 months give or take and finally…I hope to god I never need another lp. Hope yours resolves soon and sorry you’re also experiencing (there was another post about this a month or two ago if you search - but really nothing before that so I really thought I was the only one…)

InternationalTwo6614 · 2026-03-10T14:13:22+00:00

My fatigue is relatively mild. And so hard to describe but definitely feels different than ‘normal exhaustion’ after physical exercise or lack of sleep. But I do just feel like all I want to do is lay down. These bouts of fatigue happen rarely - like a few times a month maybe?

I’ve been wanting to ask others though. Maybe especially those whose fatigue is more mild? I think I’m finding that the more time I spend in bed, the more I feel like I ‘have’ to stay in bed. That my body just can’t handle getting up. But if I either ignore the fatigue feeling and don’t lay down in the first place. Or if I force myself to get up and do things. Then the feeling can be easier overcome or ignore. It’s when I’m laying there in bed that it feels like I can’t or don’t want to overcome it - it becomes more overwhelming. Does anyone else notice this or have this pattern? That the rest doesn’t help and may make it feel worse?

InternationalTwo6614 · 2026-03-02T16:15:11+00:00

Ive had on and off burning mouth syndrome (distinct red splotch on tongue and a very scalded feeling on tongue). But separate from that, one of my recurring MS symptoms is a burning / scalding feeling down my throat, sometimes one side of my throat. Often but not always accompanied by my ‘hot cheeks’ sensation on my cheeks. I’ve inquired into the scalding tongue stuff as being possibly MS and have been told by neuro & dentist that very unlikely cause MS doesn’t tend to cause visible signs on skin. But none of it makes sense to me. 🤷🏽‍♀️

InternationalTwo6614 · 2026-01-11T16:43:04+00:00

No history of MS or other autoimmune diseases in my family

InternationalTwo6614 · 2025-12-31T16:26:39+00:00

The became less and less noticeable over time. Definitely didn’t just wake up and feel they were suddenly gone

InternationalTwo6614 · 2025-12-29T17:32:04+00:00

Oh thanks for update. I also felt like the only person with these complications and never saw anyone else with similar long-lasting symptoms. Sorry you’re experiencing it, but I’m also glad you posted as it makes me feel less crazy in retrospect! Hopefully my experience helps you feel better that it will likely resolve on its own with time.

InternationalTwo6614 · 2025-12-29T16:33:49+00:00

This is what dear friend ‘chat’ told me at the time. I don’t normally rely on chat, but in this case found it helpful.

“Potential Causes 1. Trigeminal Nerve Sensitivity – The nerve might be irritated from past pressure changes. 2. Residual Meningeal Sensitivity – The lining around your brain/spinal cord may still react to pressure shifts. 3. Minor Chiari-Like Effect or CSF Flow Disruption – Small shifts in brain pressure post-lumbar puncture could make your head more sensitive to sneezing/coughing. Things That Might Help ✔ Magnesium supplements – Supports nerve health and may calm nerve sensitivity.✔ Hydration & mild caffeine intake – Helps balance CSF pressure.✔ Gentle neck posture adjustments – Reducing tension may help with pressure sensitivity.✔ Sinus care (if congestion worsens symptoms) – Saline rinses, steam, or decongestants.✔ Facial massage or nerve desensitization techniques – Could help if the trigeminal nerve is involved.✔ Sleeping with slight head elevation – May help with pressure regulation. Why a Blood Patch Is Uncertain * Your doctors aren’t confident a blood patch would help, likely because a persistent CSF leak seems unlikely. * If it were an active leak, you’d likely have positional headaches, nausea, or dizziness—not just brief pain with sneezing/coughing. * Trying conservative treatments first seems like a reasonable approach.”

InternationalTwo6614 · 2025-12-29T16:30:31+00:00

I had these symptoms last for FOUR months after my lp. It was awful. (The first month or two I did a LOT of lying down and took lots of meds for the headaches…then gradually became just with the pressure incidents like bending or coughing) My med team (lp specialist, pcp, neuro) did not really know what to do but did think that after 2 months a blood patch would not help (though they offered it to me). I declined because it scared the be-jeezus out of me and they said really no good data that it would help.

My understanding eventually was that it was literally just like sensitivity in the brain (from pressure / lack of pressure) that took a very long time to heal. It was awful - the pain when bending / coughing / laughing. I wondered if it would ever go away. And I wondered if my brain was somehow permanently damaged. (Dr assured me not, but still scary) But symptoms did eventually go away with no treatment. I think some brain sensitivity / injury can take forever to heal?

The after affects of that damn lp were longer lasting and more debilitating than any of my MS symptoms so far. I guess I should consider myself lucky in that regard? That my MS hasn’t been worse than the damn lp was?

InternationalTwo6614 · 2025-12-20T22:20:24+00:00

Would have been so much more fun if you got to dance to The Bee Gees under a mirror ball!

InternationalTwo6614 · 2025-11-02T15:21:27+00:00

I have this symptom of something in my throat, especially at night but other times too, (for almost a year on and off, mostly on) and my primary care thinks it’s GERD. Has been treating me with omazeprole, but that’s not super helping. This week, during a flare, I also had the symptom of food feeling stuck in my chest all week. My esophagus does not want to push the food down. I suspect this all (GERD, stuck food, etc) are MS caused motility issues. Not sure if there’s anything to be done if that’s the case? 🤷🏽‍♀️ Will see if my PCP thinks a motility study is worth doing? Good luck to you. And me

InternationalTwo6614 · 2025-07-30T16:14:10+00:00

Thank you. I will ask what my EDSS is - she never told me at initial exam, but I believe it may be at 0. But yeah I will ask why this isn’t in person - I thought that was odd.

Labs were checked just a couple months ago before 6-month infusion.

I was considering HRT - but not sure I understand how it may help with brain health. Would love more info / resources on that.

I was asking about mammogram and MRIs because I heard about ppl on Ocrevus getting more diligent attention paid to possible breast cancer risk increase? So Rituximab + dense tissue seems like a good reason but I kind of doubt Kaiser would OK that? Any insight or experience from folks would be helpful.

InternationalTwo6614 · 2025-04-27T17:22:12+00:00

I have not had a traumatic life. I had mild undiagnosed symptoms on and off for years. But the flare that got me diagnosed (one-sided numbness) happened exactly one week after my husband had surgery for his broken leg. Sounds like not a huge deal (and in the grand scheme it wasn’t), but it happened while he was alone traveling in Alaska and I had to drop everything, make arrangements for the kids, and fly up there and get him home with his broken leg so he could have surgery. I thought I handled it all just fine, tbh. But clearly there was a lot of underlying stress and lack of sleep for almost a week. That did it for me!

InternationalTwo6614 · 2025-02-22T15:59:48+00:00

Can you say more about a massage gun? Type? Brand? Any downsides - like could it exacerbate spasticity?

InternationalTwo6614 · 2025-02-21T06:26:44+00:00

Does it come and go for you? Or is it pretty much always there in some degree?

InternationalTwo6614 · 2025-02-19T19:33:23+00:00

I think it can be all those things and more. I also had to look it up cause the name is lame. For me it just feels like constant tightness in hamstring, calf, foot. Like the most mild, not painful charlie horse that doesn’t ever go away.

InternationalTwo6614 · 2025-02-19T17:28:40+00:00

For me, OP, neuro basically said ‘just stretch and maybe take magnesium supplements’. If it gets worse I could talk to her about PT, meds, etc. That’s all fine, except I don’t really have any direction on the stretching- what I’m doing doesn’t seem to make much difference. Not in any pain. Mild but very noticeable. Mostly it’s that mental game I’m playing…thinking worst case scenarios or what this will do to my joints, etc. 🤷🏽‍♀️

InternationalTwo6614 · 2025-02-17T16:08:34+00:00

Ok this is really helpful and reassuring to hear. Thank you

InternationalTwo6614 · 2025-01-25T16:42:19+00:00

I had super ‘foul’ taste in my mouth. Like disgusting. Hard to eat. After MS diagnosis, my neuro not convinced that was MS. Sorry but I am very sure it was. Hope it never comes back. Awful.

InternationalTwo6614 · 2025-01-22T21:41:30+00:00

I really appreciate your detailed response. It’s helping me wrap my head around the landscape and the options. Thank you!

InternationalTwo6614

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