I have such a strange hodge-podge of different symptoms from my MS that I feel I need to share them. I know we all have weird things that are hard to explain or not "major" enough to contact our neurologists about, yet they are annoying just the same. There are the common things that most of us can relate to, then there are the things that seem like strange quirks. I'm having some strange quirks right now, so I want to share them in case someone else out there is having some of the same problems.
I have random itchy spots. I have itchy spots on both upper arms, a spot on my upper right chest, a few on my sides and on my mid thighs. They drive me crazy and make me itch and itch until the skin is torn up. I clipped off my nails so I could minimize the damage to my skin, but all I want to do is scratch myself bloody.
My right ear is twitchy and itchy, especially right behind it. I have to rub it every few minutes to make it calm down. I get these shocks around it and up into my hair line -- a twang and vibration that is hard to explain, yet really annoying. My little sister and I were shopping yesterday and I played with my right ear almost non-stop. Made me feel like I had a dirty ear that needed a finger in it at all times. And if I wear a hat it is worse. It intensifies the yucky feeling behind that ear and makes me dig up my hair until it looks like a tornado took off on the right side of my head.
I have facial tics that make me contort my face and make stupid faces. I know I've mentioned this before, but I find it really irritating and embarrassing. My forehead wrinkles than straightens out in quick succession, and around my nose is twitchy and likes to pinch in making me grimace (not to be confused with the guy who likes hamburgers). So I wander around in public grimacing and with my forehead working overtime -- not exactly the most attractive look.
I have trigeminal neuralgia that comes and goes. I will be good for most of the day and when I start getting tired my face starts to hurt. It is along the right side of my face into my jaw and teeth. When it is flaring up I don't want to move my face at all. I avoid talking, eating (too bad it isn't in full flare-up, I lost almost 10lbs the last time it was at full force) and anything that might touch my face, ie no makeup. Not sure if this is related to my TN or just MS in general, but I have decreased taste on the right side of my tongue. Does anyone else have that too? I wonder if it is more common than it seems -- I'm not sure I've ever read about decreased taste before. I might have and just forgot about it; my memory is not so hot some days.
I have a hard time getting my body into the correct positions in chairs. It seems like I can't remember how I am supposed to sit anymore. I shift and shift but can't find a comfortable position. I can't remember how I used to sit and it bothers me that in chairs I look like I have a poker up my wazoo. Sometimes in bed I will toss and toss trying to find the old way I used to sleep but can't find it. Somewhere along the line I lost the ability to figure out how my body used to be in repose and I'm not sure I'll ever find it again. I know that is not a major thing, but it is majorly irritating.
I could probably think of more things, but Princess had her cousin spend the night last night and they are wild and hyper this morning; distracting me with constant chatter and questions. This probably goes without saying but I'll say it anyway: I would love to hear about any strange symptoms that you have. After all misery does love company and I can't exactly send these wild girls to your house, which you should be very glad of -- they ate all the good food in the house.
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9 comments:
Nose twitching, ankle spot itching, jaw/teeth pain randomly coming and going, blephor spasms (eyelids twitching), leg muscle/arm muscle doing the ripple/rolling twitch...yes, these are a few of my favorite things. Annoying, not fatal...and too small an issue to seek yet another PILL to take from neurology!
Sorry about those facial tics, though...
Linda D. in Seattle
You and braincheese are certainly related. I was going to reiterate that even before I read her comments. I can't comment on this one because I am still sorting out what is MS and what is not.
Really itchy spots, cold spots, little buzzes that feel kinda like bubbles or vibrating cellphone sensations on the side of my right leg, crushing pain on the side of my face (my own special form of TN), eyelid twitches, vibrating sensation inside my ear, quick shooting pain through my right ankle in mid-step, whooshing sound in my ears especially when I turn my head.
I could go on.... For many of these, neurontin keeps them at bay.
I hope you feel better soon!!
Pain in my right ear. Feels like an earache, but I've had it checked multiple times and there's no infection. I've also had it checked for TMJ, but again, it's not that. Sometimes it throbs, sometimes it's dull. Occasional blasts of sharp pain in my right temple (usually reserved for relapses.) Annoying restless, twitching and contracting leg muscles at night.
Thanks for sharing 'coz now I feel less crazy about my itchy spots. I live in Florida so sometimes it's hard to distinguish MS symptoms from mosquito bites!
A co-worker recently observed me scratching like mad and said, "What the hell is wrong with you?" Unfortunately, the only response I could come up with was, "I have holes I my effing brain!" I think I made him feel bad, but it's good to vent, right?
BOY YOU REALLY NAILED IT. EVERY DAY THE SYMPTOMS SEEM TO DO DIFFERENT THINGS. WHEN IM WORKING OUT I FEEL LIKE IM GOING TO KEEL OVER. THE DIZZINESS, THE NUMBNESS, THE FEELING OF LOOKING THRU A FROSTED GLASS WITH MY LEFT EYE. WHAY A TREAT. NEVER HAD HARDLY A COMMON COLD AND NUMB FROM HEAD TO TOE ONE REGULAR AFTERNOON. I CAN SAY THE LDN I AM TAKING HAS MENTALLY REALLY HELPED. SYMPTOMS EXASERBATE EVERY DAY AT DIFFERNT TIMES, BUT SINCE THE LDN THEY SEEM TO GO BACK TO BASELINE (WHICH STILL SUCKS) QUICKER. DFINEITELY HELPED WITH FATIGUE AND HOPEFULLY DOWN THE ROAD WITH SOME OF THIS NUMBNESS. BUT MAN YOURE NOT KIDDING. THE MS SYMPTOMS ARE REALLLLYY STTOOOOOOPID.
I have a spot on my left foot that itches and buzzes off and on. This has been going on for a year. Now my left side has joined in with the itching. Two of the fingers in my right hand sometimes get cold and they ache. Any ideas? I haven't been to a doctor yet as these seemed like silly ailments. Any thoughts?
Jo
Several times a day, BR will be sitting in his wheelchair and get the feeling that he has just messed himself. I go look, and there is nothing there.
The neuro calls it a "tactile hallucination". We call it the "Phantom BM".
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