Has anyone ever experienced Lhermitte's sign; pain in neck that travels down your spine when neck is flexed? I woke up with a super sore neck and thought I slept weird. When I started to feel the pain down my spine to my mid back when I looked down, I knew it had to be MS. I called my neuro and he confirmed it was this, but said there wasn’t much they can do besides rest and Baclofen (which I passed on because I’m a light weight, lol).
It was really uncomfortable for a few weeks and then resolved on its own. If you’ve experienced this, what has helped? Anything besides medication?
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Jer29-11
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Personally, I have experienced this quite often (back when I was first dx at the age of 25, way back in 1994). Although I am now soon to be age 55 (*gasp*), I haven't experienced it in several years.
That's the thing about this MonSter; the waxing and waning of both sx and progression. We are all "snowflakes." I am thankful that so many tx options are currently available.
Back when I was dx in 1994, it was diagnose & adios. In 1997, a folow-up MRI showed substantial "silent" progression; even though I felt great (ages 25-27). I was told I was lucky three times and to start Avonex asap, which I continue to this day. I feel it's been my "silverlining in my MS cloud."
My first experience lasted months, the sensation was from neck to feet, and wasn’t painful but disorienting and was numbing enough to make me feel like I would fall. Looking down to chart on a patient was super 😑 I was misdiagnosed then, so never offered anything. It comes back when I’m sick, tired, etc, and I take it as a warning sign that I need to rest.
Ugh! I’ve experienced numbness in my feet when looking down, but not pain down the spine. I consider myself very fortunate because this was my first experience with pain caused by MS. I mainly suffer from sensory motor issues (so just walking and talking is affected, lol 🤦♀️). I’m hoping it’ll stay away for awhile!
sooo, i get the kind that goes into my limbs and feels like lightning strikes. fun!😡 it often wakes me when i'm sleeping and i have to try different positions until it stops. that's the only thing i've found that works. i currently inhabit limboland, though, so drs might be able to help you.
i had it years ago for a couple of weeks, don't really remember, but it wasn't so bad, my neurologist back then said just ignore it, a sign not a symptom, not an exacerabation, though just read for some if it doesn't go away and interferes with daily life, neurologists can suggest meds like neurontin, etc.
I had it several times over a few years. My neurologist started treating it with Baclofen, which helped. After a few years, it finally stopped. I described it as a lightning bolt going from my neck down my back! Very painful, and I am glad I don't have that anymore. I hope your Dr. can find something to help you.
Yes, I had it pretty severely extending out for years when my MS was pretty acute and aggressive. Now 8 years later it's always there, but minor. Stress seems to make it worse or an extended lack of stress better. I think when MS flares up it always does too. Gotta keep those spinal lesions calm 😆. I haven't really found a medication that helped and I've seemingly tried them all.
Stress makes everything worse for me too! I wasn’t particularly stressed during that time, but life was very busy and I wasn’t sleeping well. Decreasing stress and increasing sleep is easier said than done these days 😆
Hello. I have trouble with the Lhermitte’s Sign when I am overheated. I used to hate this after a shower. My therapist recommended that I freeze water bottles and roll my feet over them to cool down. I can’t believe this worked, but it did! So, give it a shot. Lastly, I do take 10mg of Baclofen at night and it has always helped me get a good night’s rest, which I found to help. The hard thing about MS is that we are all different so I can’t say this will help you, but it worked for me. I wish you all the best in your journey.
Thank you! That’s great to know about the water bottles! I’m scared to take Baclofen because I’m so sensitive to medication, but maybe just at night would be ok 😊
Yep, I had it quite a bit of Lhermitte right when I was being diagnosed. For a couple of weeks, I had a major neck pain with an "electric sensation" traveling down my spine to my legs when I bend my head forward.It has mostly disappeared. No neck pain. The electric effect when bending my head only appears when I'm physically tired.
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