Lhermitte’s sign

[Jer29-11]

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?

[DM0329]

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."

Be well,

🙂🙏👍

[Jer29-11 in reply to DM0329]

Thanks for your response! I’m only a few years into this MS thing and it does throw quite a few curve balls

[kdali]

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.

[Jer29-11 in reply to kdali]

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!

[kdali in reply to Jer29-11]

I hope it stays away too! 🙏

[BlanketTime1]

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.

[Jer29-11 in reply to BlanketTime1]

That’s not fun at all! I ended up getting new pillows, but it didn’t help 🤷‍♀️

[BlanketTime1 in reply to Jer29-11]

sorry. the good news from what others have said and my own experience is it tends to come and go, so hopefully it goes for you soon.🤗

[ekelks]

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.

[leking1]

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.

[Jer29-11 in reply to leking1]

Glad yours is gone! Mine resolved within a few weeks, but I was so uncomfortable. Hopefully won’t be back for awhile (or forever lol!)

[palomino27]

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.

[Jer29-11 in reply to palomino27]

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 😆

[MyMyelin]

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.

[Jer29-11 in reply to MyMyelin]

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 😊

[Tazmanian in reply to Jer29-11]

I like the water bottle trick I'll definitely try that. I take 80 mg of baclofen through out the day with 20 mg at night but it doesn't help me sleep

[Ikeeptrying]

This was the very first MS symptom I had. Didn't know what was wrong but doctors did.

[anaishunter]

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.

(I've been on Ocrevus for 3 years).