Multiple Sclerosis Community
Multiple sclerosis, how does it feel?
About This Community:


Font Size:
Blank Blank

Multiple sclerosis, how does it feel?

Hi, i just would like to hear from people who actually have this disease, not what people have read off the internet. Thanks. What i would mainly like to know is how the tingling of Multiple sclerosis feels, like where do you get it, how often to you get it, describe how it feels and also, how is your pain? Pleases answer!
Related Discussions
13 Comments Post a Comment
Everyone of us might experience the sensory or parathesias differently, but for me it is like my leg has fallen asleep.  You know that feeling when you sat on your leg in a weird position and then ttry to get up?  It's like that.  When it isn't too severe, again this is just my own experience, the tingling is more like a vibration feeling again like someone has put a vibrating device next to my leg or foot.  My symptoms are pretty much in my lower legs and around my ribcage.  I have pain, but mostly at night.  The pain comes from the leg spasms.  The meds I take at night now help calm the spasm down and also help me sleep.  

Hope this helps.  Others will have their own experiences to share.

MS diagnosis May 2009
My tingling is much like how Julie describes, that tingling is typically on the outer part of my calf, my scalp, my left arm - but I also get waves of tingling on the backs of my legs - they start at my feet & go up to my pelvis.

It's like a fingerprint - everyone's different.  

I've had burning paresthesias, melting ice cubes, stickers in my socks (not!), nails driven into my right big toe, rip roaring spasms from my toes to my pelvis, often on a nightly basis, the "MS Hug", the cattle prod to my right buttocks when flexing my neck towards my sternum, intention tremor, Trigeminal neuralgia...and on and on...and it's different on a daily basis.  

Like Forest Gump said, "Life is like a box of chocolates..."

hi sammy i am waiting to be diagnosed my feeling are numbness numb toes left calf head face,heat rush down left thigh at times now and then electric shock round righthand side of ribs takes your breath away also cramps in my calves at night in bed when i stretch,hope this helps you.
Great topic
My (I had to add the "My" I am really trying to own this thing so it doesnt own me!) MS feels like burning, tingling and numbness all at the same time!!  I like the coorelation to your legs being asleep they just NEVER wake up!!  My pain is weird.  It doesnt hurt like I broke something but more like a constant ache!!  Sometimes quick stabs out of now where!  I have Lhermittes (shocks) with almost every movement!  That is the worse.

Sorry for being so negative!  It is morning!

Hi all, i'm sorry to hear all your pain, it just seems so terrible i almost want to cry for you all. I have so many symptoms of MS and it just seems like a slow and mind recking process trying to get a diagnoses! I have had an MRI of the brain and im waiting on a spinal MRI and a spinal tap. My brain MRI showed up normal but i have a feeling the next ones wont! The reason i a, asking how MS feels for you is because i have tingling all over every single day and it just never seems to stop. I look up MS symptoms and it says tingling as a symptoms but it doesnt define how it might feel. Tingling can present in so many types of ways. Thank you for sharing your stories, i really am truly sorry and it makes me sad that life can be so cruel to some.
Ps, with MS is it possble to "NOT" go disabled even if you don't have BENIGN MS???
thankyou xxxx
Hi Sammy,

Welcome to the forum.  I hope you don't have MS, but that you do find out the source of the problems. Your right, such a slow process most of the time. Has the Dr. ruled out all mimics?

I experience more buzzing and burning than tingly, though I do get that from time to time but it's random.  

Hope you like it here, so many wonderful people, and such good information.

See you around!
Hi -
The symptom you describe doesn't sound like MS.  Yes, it causes tingling and many other parathesias, but not all over all the time.  It is more likely to cause it in one area at a time, as MS attacks the myelin of one nerve at a time.  There are attacks and remissions, unless you have Primary Progressive, which is less common.  Symptoms can stay, if the nerve isn't repaired, but it is still only in certain places As areas of destruction heal, you see the characteristic lesions on MRI.  Your symptoms sound like a metabolic disorder.  Has your vitamin B been tested?  I hope your condition is something that can be treated and not MS.  If you have other symptoms or questions, I know we'll respond.

I wish you well.  Blessings, Jan
I have the same sensations, but as others have said they are not always in the same place.  I am not dx, however, so what I say can be construed as simply another person with similar symptoms.  My "constant" has been my legs and feet. It only recently has developed into a limp in my right leg. However, I have had tingling in my face, head, arms, hands and especially down my shoulder and neck.  It's not fun.  But the longer you live with it the easier (???) it can seem. The headaches, though, never get easier.

Does anyone here have primary progressive?
my more recent MS thing is scratching one area of my leg and feeling it in another area on that leg.

I have balance problems and foot drop. I wear leg braces. Frustrating weakness in my legs.  Numbness, tingling, and spasms.

My biggest issues are not so much sensory as major weakness in my lower part of my body.

I do have significant pain with Trigeminal Neuralgia. Loss of sense of pain on my right side.

Soooo, anyway. That is where I am at right now.

LA dx'd 2008 Avonex from Feb 2008-June 2009  Will be starting Betaseron this week.
Hi, if you want to ask a question you can post your own, did you know? Usually when someone post a question they expect answers not more questions. Hope this helped :)
Wow, thank you all for your post! You are all amazing people, and I feel so deeply for you! I'm sad that you all have been picked out of a bunch and have been chosen to suffer; well at least that's how I see it. You are all brave beautiful people and amazingly enough you all seem to stay so positive & helpful to others like myself even though you have such a lot going on for yourselves. I, too, obviously hope that I don't have MS but the good side is at least if it is the case, I will have all you lovely people to talk & help me through. I hope all you guys aren't suffering to much and I hope you all are happy, once again, thanks for your answers, your great!

Sammy xxxx
Hi, i just wanted to say thankyou for your answer, it was a really good one, very clear and you answered it well! I hope i don't have MS, but like i said, it's a long process, i'm still waiting to see a neuro for a spinal tap and more. I will let you know what happens later down the track <3
Post a Comment
Weight Tracker
Weight Tracker
Start Tracking Now
Multiple Sclerosis Community Resources
RSS Expert Activity
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
The Death by Heroin
Feb 03 by Julia M Aharonov, DOBlank
Top Neurology Answerers
Washougal, WA
Great Neck, NY
Dayton, OH
Durham, NC