Where is your numbness?: I'm curious about... - My MSAA Community

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Where is your numbness?

greaterexp profile image
65 Replies

I'm curious about the "typical" location of numbness with MS, though we all know that little is typical!

I have an area on my collarbones, which seems to be spreading. Most folks seem to discuss numbness with their limbs. What about you?

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greaterexp profile image
greaterexp
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65 Replies
Elizt3 profile image
Elizt3

Bottom of my feet, 2 and 3rd fingers on left hand. When I'm stressed, not sleeping well, sick, etc., the numbness can move up from my feet and toward my knees. Thank you for asking.

Kenu profile image
Kenu

My right arm and leg is numb and has been for 25 years. Off and on on the left side, not much. Mainly Fatigue. 🙏😉😊 Ken 🐾🐾

Allen5280 profile image
Allen5280

Today there is a hole in my chest where my heart should be... a big empty gaping hole. I know that's not exactly what you meant, nevertheless it is there, and MS causes it. I sometimes have areas such as feet and legs or at times just strange patches of numbness. It also varies with me as well. Day to day, hour by hour, moment by moment. Outside stressors have that effect, anxiety has a major role in it.

lbenmaor profile image
lbenmaor

Fingers. I'm lucky it's not as often as it used to be. Great question to ask.

Leslie

twooldcrows profile image
twooldcrows

only when i sit for to long in one position it will be in my hands or whole arm ..not all the time just if i sit a certain way to long ...

mm1527mm profile image
mm1527mm in reply to twooldcrows

Yes my hand arms or legs when i sit too long. I noticed my left foot over summer that went away after my ocrevus. My lip tongue and cheek which thankfully went away with steroids over summer during my first episode which sometimes i feel with my tongue slightly if stressed.

bxrmom profile image
bxrmom in reply to twooldcrows

I have the same thing with my right arm but never connected it to sitting for too long cause that is when it happens most of the time. Learn something everyday from someone on this group! thanks!

carolek572 profile image
carolek572CommunityAmbassador

All limbs are numb, up to the knee/elbow, with a constant tingling sensation ever present. Anxiety makes it worse :-D

bxrmom profile image
bxrmom

2 fingers on my right hand sometimes and my right foot sometimes. My right hand will get really cold feeling as well.

Whole body Feet and hands are the worst!

Neurosurgeon said it is because of the ddd, but they say that ms is still not ruled out until they correct my spinal cord problems. I find it very difficult to do anything.

So many of you have numbness too.

Stress does make it worse.

6092177588 profile image
6092177588 in reply to

What is DDD? How difficult for me is my genetic spine issues too. I have two MRI coming and also pain management. They may insert pain stimulation. Not sure but so much to do and I am afraid riding to appointments.

6092177588 profile image
6092177588 in reply to 6092177588

Also numb in feet,fingers. It feels sharp pain like a sprain.

in reply to 6092177588

Degenerative Disc Disease. In my neck. With a side of lesions.

6092177588 profile image
6092177588 in reply to

Is degenerate disks related to ms?

in reply to 6092177588

I'm not sure, my symptoms where body numbness and weakness. My pcp ordered a brain mri and it showed lesions, so he said possible ms and referred me to a Neurologist. I had to wait almost three months for that appointment.....meanwhile, my PCP ordered a neck mri, which ask o showed lesions and DDD.......so now they wanna do surgery before even addressing the possible ms. My surgery was supposed to be on March 24......and Coronavirus hit. So everything is postponed for now.

Neworleanslady profile image
Neworleanslady in reply to

I’m no expert or anything but i would pursue the ms stuff pretty aggressively to get the ball rolling if ms turns out to be the issue. I say that bc in my experience it takes a long time to get started on a new ms medication, meaning that when I’ve changed meds since my diagnosis it has taken me 2 to 3 months and a lot of self advocating to receive the new med each time

in reply to Neworleanslady

I agree. Coronavirus has stopped everything here right now

rjoneslaw profile image
rjoneslaw

since i've been working out i dont have any numbness

Neworleanslady profile image
Neworleanslady in reply to rjoneslaw

What do you do to work out?

rjoneslaw profile image
rjoneslaw in reply to Neworleanslady

I have been doing the ms gym paid membership.

You can do the non paid and get results as well

just go to themsgym.com click menu and there you will find all the places the videos are

Neworleanslady profile image
Neworleanslady in reply to rjoneslaw

Thanks!

Neworleanslady profile image
Neworleanslady in reply to rjoneslaw

I just did the first part and i love it’!!

rjoneslaw profile image
rjoneslaw in reply to Neworleanslady

Great

2littletime profile image
2littletime

My hands (usually the rigjt) & every so often my bottom lip.😕

BoniSue profile image
BoniSue

I get numbness in my feet and legs but also more recently it spreads from lower neck between shoulders and if I have a really bad day all the way to my tail bone. It causes weakness and some other weird symptoms.

leapsnbounds profile image
leapsnbounds

I have numbness in both feet and 2 of my fingers. I have tried things to decrease the numbness but only soaking my feet in a warm foot bath gives them temporary relief for that time.

erash profile image
erash

Right face because of gamma knife for trigeminal and dysethesia feet to knees intermittently, occasionally right hand but I think that’s because of ulnar compression when too much leaning elbow (not MS)

Neworleanslady profile image
Neworleanslady

I experience a decrease in position sense of my calves and feet when i sit or recline without moving my legs for any period of time (watching tv, for example). It move up to my thighs the longer i sit. And i feel coldness in my calves and ankles. Carpal tunnel syndrome numbness in my right hand but i think that is unrelated to ms.

Neworleanslady profile image
Neworleanslady

I regain lower extremity position sense when i move or touch any part of either lower extremity

pamgarner profile image
pamgarner

of course these shaky legs. also my rib cage,Question, for those of us that have numbness in our hands I have seemed to have loss some strength in my hands,typical?

ahrogers profile image
ahrogers in reply to pamgarner

Both of my hands have been numb for about 3 years but I didn't start getting weakness until about a year ago and only in my right hand.

pamgarner profile image
pamgarner in reply to pamgarner

glad i am not alone,sorry for you though,i have"phone" dr. appt tues.

Neworleanslady profile image
Neworleanslady in reply to pamgarner

Omg i have a “virtual” visit Tuesday too!

pamgarner profile image
pamgarner in reply to Neworleanslady

I hope this doesn't become the "NORM" after this virus,visit by phone and computer

Neworleanslady profile image
Neworleanslady in reply to pamgarner

Me too!

I too have numbness in my feet through to my toes and then up through calves, in addition to my fingers up through arm to elbows. I am not sure what is MS and what is carpal tunnel. Great question.

jackgaume profile image
jackgaume

My numbness is in my legs from the knees down my feet tingle and hurt constantly.

ahrogers profile image
ahrogers

The first place to go numb was the soles of my feet and that is what got me to the doctor and diagnosed. It continued up both my legs over the following month. No surprise my first MRIs showed a lot of lesions in my thoracic cord(as well as lots in my brain and a small cervical cord lesion. On the bright side it made the diagnosis easy). My belly has been numb since I was pregnant 22 years ago so unrelated. 6 months after diagnosis I couldn't feel my gums when I was flossing or inside my ears when cleaning with a Qtip (I know I am not supposed to stick them in my ears but I hate having moisture in there after I shower 😁) my neuro said that wasn't a typical MS symptom but my legs were feeling heavy too so had MRI that showed progression. A little over a year after that my hands went numb, MRI then showed more cervical cord lesions. At this point I don't think I have normal sensation in any part of my body.

I can't even remember what normal sensation feels like so I don't really think about it much. Of course massages and pedicures aren't as fun as they used to be 😃

MarkUpnorth profile image
MarkUpnorth

Here, there, everywhere. Right now, my left had, those fingers which rest on the a and s keys. Why are you making me think about this, yeah, my left foot, and my.... but often ...... yeah, everywhere. Just ignore it!

kdali profile image
kdali

Hands and feet that are numb in the morning. This spreads to legs/elbows as the day goes on. If it’s a bad day, it’s the entire back of my body/head too. 😬

When I was first diagnosed, it was one leg only and no feet. That was only 4 years ago!

Hooverd65 profile image
Hooverd65

My feet seem to be worst... But now I've got severe joint pain...

jorrell profile image
jorrell

Feet 24/7/365.

CrazyCatWom profile image
CrazyCatWom

After 24 years, I could almost say, "Here, there, and everywhere." I've had the side of my face go numb. I've had a side of my body go numb. Aswell as legs, feet, arms . . . And I had a hand go so numb, I once stuck it in a pot of boiling water and didn't know it until I pulled my hand out blistered. The weirdest for me wasn't neccessarily numbness, but what I felt was more like delayed reaction. I'd watch my hand touch my abdomen but not feel it . . . until several seconds later when my ghand wasn't there anymore.

in reply to CrazyCatWom

I understand the “delayed reaction “ and I have been burned or scalded...

I am not only with all this.

It is definitely different to try to do simple things.

Claudmich profile image
Claudmich

I am pretty much numb all over. Diagnosed PPMS from the start. It’s so bad I had my gall bladder almost rupture because I had no feeling of pain from it but I was vomiting so had that my housemate brought me to emergency and I was immediately put on intravenous antibiotics and wasn’t operated on until I was there 4 days. I asked my neurologist what else is MS hiding. That was really the first time that I got upset about having MS.🤣

DM0329 profile image
DM0329

My first symptom was numbness in the right side of my face. Throughout the years, I've also experienced numbness in the tips of my fingers (both hands) and "entire" left-sided numbness (longish exacerbation once).

stepsforNeeC profile image
stepsforNeeC

Good afternoon, my right side from elbow to toes are "tingle City" but my right eye lid jumps too. When I'm stressed and sleep deprived my back and neck are really back.

NeeC

hairbrain4 profile image
hairbrain4

I have numbness on the bottom of my feet. At times my pinky finger & the one next to it go numb. At times my index finger goes numb. My face & tongue go numb also. All on my left side. Since starting Ocrevus I don't have too much of it anymore .

IFwczs profile image
IFwczs

Left foot and leg. Not numb to the touch but semi-numb, for many years. The foot drop, however, is on the right leg and foot.

SaltyGirl profile image
SaltyGirl

I haven't felt my fingertips for about fifteen years, but compared to the numbness from the chest down before treatment, I'm thankful for the poor handwriting.

BigMar7 profile image
BigMar7

My left foot is numb most of the time. The bottoms of both feet hurt sometimes too.

mrsmike9 profile image
mrsmike9

The soles of my feet and some toes. But when I lay down at night they're on fire!!

greaterexp profile image
greaterexp in reply to mrsmike9

It always seems that the night is the worse for many of us. Isn't it bizarre how our symptoms can change so quickly? We are mysterious!

Cutefreckles72 profile image
Cutefreckles72 in reply to greaterexp

I agree. Night time can be hard to deal with when it comes to MS. During the day my right leg is manageable, but when I lay down, it goes crazy and I am awake all night.

greaterexp profile image
greaterexp in reply to Cutefreckles72

Yes, I can be fine all day, but when I sit in the late evening or then lie down in bed, things have a way of changing. I hear this a lot, so it must be a widespread problem.

robster1 profile image
robster1

Yeah it’s mainly legs & feet w/some grasping issues in hands & fingers. I’ve had a numb feeling on the bottom of my feet for at least 25 years or longer. I told different doctors over the years and they always blew it off. My blood sugar was & is less than 100 consistently. My neurologist told me this is a red flag for him to begin testing for various things one of which is MS. Hindsight is always 20/20...if diagnosed earlier my disabilities would have most likely been diminished.

That’s all neither here nor there...I’ve lived one day at a time accepting things as “it is what it is” for 2 1/2 decades. Why would I want to change what is tried & true in my life? My attitude & outlook w/Gods assistance are a huge part of my coping w/things completely out of my control.

God is so good!

greaterexp profile image
greaterexp in reply to robster1

Amen!

BeckyAnn1966 profile image
BeckyAnn1966

Both arms and right leg from knee down including my toes

jeffsgirl profile image
jeffsgirl

My hands go numb every once in while and sometimes I've just had to learn to laugh about it. In December, we were volunteering with our local chef's association and I was helping with desserts. Everything was going well until I went to get the desserts off the rack and my hand decided to choice that moment and go numb...crash...8 beautiful individual desserts hit the tile floor. I tried my best to hide how I was feeling since no one was upset but me. The next day we were volunteering again with some of the same chefs, when one of the servers dropped a tray of glasses....the first thing I said was "it wasn't me!". We all laughed because things like this happen to everyone every once in a while.

greaterexp profile image
greaterexp in reply to jeffsgirl

I love your attitude!

jeffsgirl profile image
jeffsgirl in reply to greaterexp

thanks!

cljones profile image
cljones

I have numbness in the fingers of my left hand, also the left foot and right foot practical numbness.

elaineinqueens profile image
elaineinqueens

Numbness was my first symptoms and it happened in the toes of my right foot, eventually spreading to most of my foot.

greaterexp profile image
greaterexp in reply to elaineinqueens

It was one of my first when I had the CIS years ago.

itasara profile image
itasara

My first major sx of MS was transverse myelitis. I was numb from my chest to the bottom of my feet. That was in 2005. Most of the numbness went away except for the toes and balls of my feet which after almost 15 years are still numb. I feel at times like I am walking on sand. After awhile I ignore it especially with shoes and socks on.

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