Weird symptom...anyone else get this. - My MSAA Community

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Weird symptom...anyone else get this.

stacieann1989 profile image
13 Replies

Hi, all.

So I have had the strangest symptom, probably for around a year now, possibly more. It comes and goes, which makes me forget about it when it's not happening. But it's just started again today. I'm interested to know if anyone with MS experiences this. Okay, it's difficult to explain, but I'll try my best 🤔🙂 Basically, if I tip my head forward, like lean down or put my head forward to tie my hair back etc, I have to put my head up as quickly as I put it forward because I get this horrid sensation up my nose and into my brain, it's what I can only explain as the feeling of water going up your nose. Or if you've ever had a bad bang to the head and you experience a horrid sensation in your nose. They are the only two things I can think to conpare it to. I hope it makes sense.

Thanks in advance for any responses 💜

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stacieann1989 profile image
stacieann1989
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13 Replies
Fattius profile image
Fattius

This happens to me often. When I get tired and bogged down, it feels like a hand is pulling me down and I get this sensation

Taylorsmom profile image
Taylorsmom

Hi stacieann1989 . Yes, I've had this before, it's called L'Hermitte's. When it started happening, I ran to Google to find out if it was a thing or was I just imagining it or something. People with MS tend to suffer from this as well is what I read. Also, I spoke with my neurologist about it and he was well aware of it. When I was admitted into the hospital for a 3 day infusion of Solu-Medrol, that symptom went away along with the others (tingling & numbness) symptoms that I had. I'm not saying that this is what you are having but it's good to have a topic to start off with and discuss with someone.

Raingrrl profile image
Raingrrl in reply toTaylorsmom

Don't mean to be rude Taylorsmom but L'Hermitte's is a very specific set of symptoms and doesn't seem to fit what stacieann1989 described other than it involves her neck. She doesn't talk about the feeling of an electric shock down her spine which is characteristic of L'hermittes.

"L'hermitte’s sign (pronounced Ler-meets) is a sudden, intense feeling like that of an electric shock, triggered in people with multiple sclerosis (and other conditions) when they move or flex their neck in a wrong way. The shock sensation can pass down the neck into the spine, and radiate into the arms and legs and, possibly, the trunk."

Taylorsmom profile image
Taylorsmom in reply toRaingrrl

As I mentioned in my post Raingrrl , "I'm not saying that this is what you are having but it's good to have a topic to start off with and discuss with someone."

agate profile image
agate

stacieann1989 , I haven't had the sensation you describe but I have had Lhermitte's sign. It happened often in first few years of MS for me. Your water-in-the-nose sensation might be a variation of Lhermitte's but I haven't heard of it ever taking that form. It's always described as like an electric shock going up and down the spine, sometimes radiating out to the arms and/or legs. I agree with Raingrrl.

erash profile image
erash in reply toagate

agate stacieann1989 Raingrrl Taylorsmom

I thought of lhermitte sigh too.

I wonder if as with many things, it doesn't always follow text book description. Would be curious what your neuro says?

It wasn't until I read it hear that I ever heard of neuropathy described as a feeling of vibration...and then I experienced it, and had an aha moment.

Or tell me how I can experience both muffled hearing loss and exaggerated loudness in one ear simultaneously?

The human body forgot to read the textbooks! 📚

Taylorsmom profile image
Taylorsmom in reply toerash

Good morning erash ! My thoughts exactly. Every disease and its symptoms are different for everyone. The body itself is going to do whatever it wants to do, when it wants to do it. There may be some similarities or new symptoms all together, we never know.

MarkUpnorth profile image
MarkUpnorth

Fascinating! I wanted to start a post regarding weird symptoms from MS, just for fun, thinking I've got some good ones to share. I will, later, so as not to confuse this one in case anyone has an answer for you, but already I'm seeing new ones I've never heard of, and gladly never had. And yes, yours is one of them! Congrats!

stacieann1989 profile image
stacieann1989

Thank you everyone for all your comments and advice. It's comforting to know I'm not alone. Hope everyone is well x

suznj325 profile image
suznj325 in reply tostacieann1989

@stacieann1989 ... I also experience L'Hermitte's sign periodically... and occasionally I feel that electric shock on my all the way down the middle of my tongue. It's crazy.

Fattius profile image
Fattius

I too have this sensation, alot. Starts at neck, upper BACK and has been running through my testicles. Very unsettling but has fallen upon deaf ears with both docs! Took over two weeks to hear from my Nero and heard nothing from my family care physician in over 2 months since they found out Medicaid was taken away. I'm also experiencing needles between my fingers,toes,and around my ankles just adding to the plethora of other symptoms! I was told the attempt I made on my life 2 months ago was very childish and selfish but what am I to do now that everyone is abandoning me? Quite a pickle!!!

scooterjon58 profile image
scooterjon58

Stacie, check out Lhermittes at "More MS Symptoms" on my blog at scooterjon58.com. Lhermittes is the weirdest feeling!

Kevin_McMillan profile image
Kevin_McMillan

Hi Stacieann1989, I'm sorry for all of your ailments! It sounds like you have MS, it took me a long time to get diagnosed too, I ran in to the wrong doctors and they have me a reputation. You are pretty and young, I'm sorry for your struggle, I wish you well! What is you tattoo of on your left shoulder?

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