I am so glad you that you have posted this symtom (numb lips) I too have this quite abit and when drinking I often scold myself with hot tea!
Its like you have come out the dentist, I find rubbing them for a while sometimes helps or maybe its just that I think I can feel them again.
The buzzing thing I you to describe to my GP was like a motor running and sometimes a cell phone. I now know that I am not going mad as others suffer this ordeal also.
Sometimes my calfs buzz but not as much as the chest area and feet.
When I am in a flare I have oticed the buzzing in abdomen first this is my calling for an attact and the rest is an influx of numbness, pain, fatiques and eye problems.
Adnwsti hope you are not in too much discomfort and things improve when you are back in remission.
Good Health for the coming weeks your friend tarter
I am glad Lulu asked you to start this topic over. I think it might be one of the most universal - and hard to describe - symptoms we all face.
Since diagnosis I have occasionally had L'Hermitte's (the symptom that is triggered by bending the neck forward) of feeling a jelly-like vibration in my left front calf. Over the weekend suddenly it was my entire left side, including my left face. I tried to verbally describe this sensation like I would for a neurologist - and I began rolling my own eyes, lol! I sounded like a lunatic. My entire left side buzzed in kind of a vibrational, electrical feeling that made my limbs feel weak. I would say it made my whole left side feel weak, but how does one's torso and face feel weak?
I'm pretty sure this is a new relapse. Thank goodness it is mild as mine always are, but despite exercise my right side is weaker, too. Over the weekend I couldn't manage my regular trips up the stairs and resorted to the elevator. Thank God we had one put in, despite the cost. It was intended more for my mother, but I am the one who uses it.
I drove to the store yesterday and could barely lift my right arm to adjust the defroster for the front window. What the???
Day before yesterday I made a stop at City Hall. I swung my right foot into the car, but the rubber sole on my shoe caught the rubber mat and wouldn't slide on in. Sometimes if I lower myself a bit, the angle is better to slide that right foot on in. I bent the left leg too much and went beyond the point of no return. So, there I was in full squat outside the door with my right leg in ront of the drivers seat. No way was the right leg going to lift me up.
I looked around, as this was getting embarrassing. I let myslef down to the ground, then rolled over to my hands and knee - the other leg was still in the car. I reached for my pant leg and dragged the right leg out of the car and started to get everything where it needed to be to get to my feet. Suddenly I hear people running toward me. Drat. A very concerned man was approaching with his young son who was dialing 911. I assured him I was okay and got to my feet. Over feel stupid? and grateful?
I thanked him and got back into my car, with my left side buzzing and my right side limp.
So, yes, I do understand the weird sensation you describe. For me it isn't painful, but it still feels awful.
Hi and welcome to the forum,
You will find that this is a great place to share stories, experiences and gain some help and good info, or if you want just have a good whinge, sometimes it is nice to know that you are not alone with your symptoms.
I get the electrical shocks that you talk about and mine are very painful, sometimes they bolt down through my spinal cord down into my legs and other times it runs down the inside of my leg down to my toes. I feel like I have a live current running through my body or I have been zapped by lightening (not that I know what that feel like), I think it feels a bit like touching an electric fence or even the nerve tests that they do but at a higher pain thing,
My neuro believes it is spinal lesions that are causing this. I don't have MS but with TM you can get a lot of pain syndromes, it's weird to describe but you feel reassured that you are not mad when you know that someone else also feels the same thing.
I hope that you are not having another relapse, that's not the kind of birthday present that you want.
The weird things we get!
I actually have experienced being zapped by electricity, twice (lol) first was childhood curiosity and the second was accidentally at work, still stupid but not intentional the second time around and yes even without touching the severed wires that are still connected to power I can say YES it feels just like being electrocuted, though id much rather the real zaps of electricity, less painful me thinks lol
For me, when it happens its more often painful, the world disapears as im gripped by it, not nice, its zap, a lot of oooooooh myyyyyy gooooooooood's until its over, thankfully its only a few minutes but it feels longer sometimes. The other day all i did was lift my arm and the next thing i know i'm rolling around on the floor, doing the omg's, zapped in my neck and the current ran along my arm, all i could do was hug my self until it ended.
I'm having a bit of trouble with memory of what the buzz feels like its been a while, sort of like childbirth without the warm and fuzzy feeling afterwards lol. I focus on the funny side of things and i really cant remember things i'm not currently dealing with, 2009 is becoming a bit of a blur.
I still have tingles in my face and pins and needles in my feet everyday, those things havent gone away yet, not sure they will this time. I do still get an invisible gremlin sticking me with a pin, feels like i've been bitten by a bug, but there's never anything there, in a way thats been handy. In summer here (OZ) we get a lot of mossey's and i'm so use to feeling like i've been bitten that i dont even feel the difference when its a real bite.
I have hot spots on my head, feels like i'm burning but nothings there, the other night my husband touched the top of my head with his chin, no longer than a second. The reaction i had was instant pain and an odd sensation, lots of hot pins in waves across my head where he'd touched, it hurt like a hot roller does when it touches your ear, though i couldn't get relief by removing the blighter, lasted hours too. Now i'm flinching when someone is near my head, brushing my hair makes my head heat up, not fun when my hair is past my butt and takes me hours now. Soon the local birds will have a new home to live in lol.
I'm glad you found us :-)
Welcome, Adnvwsti! (How do you pronounce that!?) I get electric "face shocks" too-- they typically run in a semicircle around the outside of my eye and into the side of my nose and upper lip. Sometimes I get a general shock in a vertical line just left of center from my nose to my chin, or one through my right cheekbone. Very weird, but fortunately not painful (I do have a long history of painful shocks too, but in other places.)
Quix, sorry to hear about your relapse; hope you get better soon. (Regarding the "jelly-leg" Lhermitte's, there's one MS specialist in this town who would say that's not Lhermitte's, because it doesn't go down your spine. I flat-out contested him on that, but he didn't care!)
Nancy (no diagnosis)
Nancy - You know how much I respect rule-bound idiots. My neuro, here in the same town, had no doubt that it was L'Hermitte's. :))
Quix--yup, I know. :) I think this guy (that I saw last year) isn't even rule-bound--he just goes by what he THINKS he learned 20 or 30 years ago and has never questioned since. :)
Tarter, you be careful with that hot tea, my friend! But judging by the responses and experiences people are describing, you and I are definitely not alone in these sx's.
Udkas, it is definitely that feeling of touching an electrical fence at times, although sometimes it's not that strong. I know the electrical fence zap because I grew up around livestock and therefore, around electrical fences and cattle prods and things like that. And yet, while you have had these sensations, you are not diagnosed with MS, but with TM? It sure sounds like MS and since your doctor suspects spinal lesions, it causes me to suspect the same. Actually, I already have been, and probably my doctors have been, although they don't always tell me everything they think. But my electrical current zaps are less an actual zap than just the feeling of electrical currents running over my feet and legs. I guess that's the same thing, though.
JJ, I get those invisible gremlin pin-pricks too! You're the first person I've heard talking about those! So hooray! I'm not alone there either and am not going crazy. Here in far northTexas, we are beginning to get a problem with fire ants and so I'm always slapping at one leg or arm or another because I think I'm getting stung, alnd then there's nothing there. LOL:)
The electrical shocks in my feet and legs are distracting enough that they will get my immediate attention, and often, changing positions doesn't make them subside.
I'm sorry you don't have a solid diagnosis, Nancy T., because your symptoms alone sure make me think you have MS. Not a doctor, but sure sounds like....
Quix, thank you for your story and everything else you've contributed and shared with me, just today. It has ALL helped me, the articles, etc. Everything I can learn is a good thing.
As to your story of humble embarrassment, I will share one too. Late last summer, as I was walking my little old dog (she's 15 years old now), I reached down to pluck something off her back--can't remember what--and the next thing I knew, I was on the ground. Just tilting forward slightly caused me to lose my balance entirely. When I realized I was going to fall and couldn't stop it, I just went into that old drop and roll thing, knowing that once I was down, I could get back up on my knees, probably, and from there, if I could find something to hold onto, I could stand again. My dog wasn't going to leave me. I wasn't worried about having to chase her down. A car came by just as I fell and the driver stopped to ask if I was okay? Yes. No. Absolutely not. Maybe so. Just go away, please. I'm embarrassed enough that I've become such a klutz that just bending over will cause me to fall. Why on earth did you have to witness my humiliation? I didn't yet have the MS dx--I was about a week away from getting it, but by that time, I felt all I needed was a doctor to confirm what I already knew. Sure enough, that was true.
My left side causes problems--the point of my left shoulder ALWAYS feels bruised and tender and I cannot lie on it, more spasms in my left side than my right, and less feeling on the left side of my face than the right. Plus the left eye won't track the right eye very well anymore. But like you, my right side is my weakest side. I can no longer balance on my right foot. I'll fall over. The pain in my right hip is intolerable. But even my internal diagnostician who got so many things wrong at least got it right on the L'Hermitte's sign business. That and my vision was what caused him to tentatively diagnose MS and set me up with MRI's, lumbar taps and the neuro.
I have felt that I have been in a steadily progressing "relapse" since February 2009, only interrupted for a few weeks in late July and early August by a round of low-dose Prednisone. After that, a little better through October, and then it nailed me again with crushing fatigue, constant nerve pain, L'Hermitte's and all the other stuff. I hope your relapse moves away from you quickly, Quix. We need you here.
As to my MS forum "nickname", Nancy T, the story is that when I was trying to register for the forum, I became frustrated. My first name had been taken countless times. My middle name and last name as well. So I put in my "Indian" name. As two words, for some reason, the forum registration still would not accept my nickname. I deleted the second word and I was in. Then I realized the twisted humor in it: "Adnvwsti" means "running", something I don't do anymore. The name is in Cherokee spelling, so you would pronounce it "Ah-duh-naw-wes-tee". But heck, make it easy on yourself and just call me "Jo". I hope you get your diagnosis soon, Nancy. Thanks to all of you for your responses. jo
Jo- The falling stories are really ripe, aren't they? I tripped on the curb a week or so ago while carrying some groceries. Like you I remember my martial arts rolling fall and down I go. There I am quite nonplussed, sitting in the middle of the sidewalk with groceries sprawled all around. My neighbor drove by and waved at me smiling a big "hello". And then she drove on by to her house. Now, I didn't NEED her help, but it felt surreal waving to her - as at that time I was not sure that I could get up.
Sounds like the difference between relapse and remission is blurring, no? I see why your doc is considering a combo therapy. I'll go back and reread the MM stuff. Has he mentioned if he thinks you might be sliding inot SPMS?
Udkas - from everything I've read, I also believe the electrical zaps are from myelopathy - spinal cord lesions.
I think that is why my neuro is convinced that I do have spinal lesions, along with the fact that I have clonus and hyperreflexia.... I know one thing they are a pain!! Pardon the pun.
I too have had a fall or two but more falls lately. I was at a very large party and it was night time and I got up to walk out to the car and somebody made reference to the stars in the sky, I looked up as I was walking and just kept going backwards, sudden movements make me lose my balance at night time...lol, but it was really embarrasisng because there was so many people there and they were milling around me, I was unhurt, but annoyed that I couldn't save myself... and that I had to do something so silly in public and I was driver for the night so I can't even say I had champagne!!!
To Quix and Udkas:
This falling thing is definitely a pain!! LOL:) I first noticed it last spring. My legs just felt so heavy that I suppose I didn't lift my leg high enough to manage a low curb and the new thing I knew, I was sprawled on my face on the concrete. What shocked me that time was that I'd had plenty of time to catch myself and had attempted to, but my arms and hands just gave way. Like spaghetti noodles. That was really embarrassing. A few weeks ago, I fell in the shower simply because I got dizzy looking up, just like you Udkas, and next thing I knew I was falling. I fell against the shower door, which popped open and I landed face first on the tile floor. For about two weeks after, I thought I'd broken the roots on two of my front teeth I hit so hard.
Now my husband has noticed I often walk sideways. He is a chivalrous kind of guy who has always opened my car door for me and things like that. But after we met, it took me awhile to figure out that he will always place me on the inside when we're walking across a parking lot so that I'm closer to the parked cars and he's the one in the path of oncoming traffic. It's his way of protecting me and after 11 years together, I still tease him about it. But now, he says that when I walk with him, I tend to veer left, so he has to constantly check my position and re-position me. I have always been one who was very independent-natured so his extra, gentle care of me saddens me, while at the same time, I'm grateful that I have him to appreciate.
And yes, Dr. Quix, the difference between relapse and remission for me has definitely blurred. It seems like I had a couple of slightly good months there last Fall after the Prednisone, but then the MonSter was back, and now it's building in intensity with a vengeance. My husband and I moved last September cross-State, to where my grown sons and our grandson live, and I have only seen my neuro once since arriving due, frankly, to lack of funds and insurance. My husband is still looking for work and me, I am quite certain I cannot hold a job anymore. But I am receiving "invitations" to read federal grant proposals from a few of the government agencies and I can do that at home and bring in a little income to supplement my husband's, so I'll try it.
However, what is most disturbing to me is my short-term memory loss anymore. I will put something in the oven, glance at the clock and think "30 minutes from now", and then ten minutes later, I'll be wondering what time it was when I put the food in the oven. Very upsetting. I am really concerned that I will try to read those grants and won't have good reading comprehension or memory retention, but will need to read each sentence six times before I get the gist of it.
Anyway, I'll see my neuro on the 29th of this month and I suspect he will lean toward the opinion that I am sliding into SPMS. About 60 days ago, I woke one night unable to move or speak. That went on for about 20 minutes, I think, before I was able to call my husband's name. Last week, David told me that I had wakened him one night making little noises in my sleep. He thought I might be having a bad dream and was watching me to see if he needed to wake me up when my left leg and foot began to twitch and jerk violently under the covers. It didn't wake me, so I don't know how many times that may have happened before since David is typically a heavy sleeper. I suggested that what he'd witnessed, though, was spasms, but he is firm in his belief that what he saw was a seizure of some type. So I'm glad I'm going in to see the neuro. This neuro is new to me really, but I think he is a good one. If I am slipping into a more progressive MS, I shall hope it's SPMS and not one of the others, but I'm thinking it's time to just stop being a workaholic and apply for disability. I'm not really doing anyone much good trying to work like I once did anyway.
Ahhh, well--everyone, I hope you each have a blessed day!! jo
Nancy, I get them in my facet too, but they are very painful, and happen in and around my right eye. Like a live wrire stuck in my eyebrow mostly, or my eye, or nose, or cheekbone, thankfully they only last a few seconds!
I'm another limbo-er! Looking more like possible lupus at the moment, but I don't expect anything to ever be decided since my neuro likes to play down every possitive test and say its nothing, and that there is nothing a wry with my nerves.
Jo, I'm sorry for what you're going through. Only you know if the time has come to pack it in and try for disability. If that is now, then God bless. We can't keep going up against a brick wall forever.
Your husband sounds like a doll! So glad you have him.