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Phantom Itching and Burned tongue mouth feeling

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katiewondergirlie
katiewondergirlie Posts: 9
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Has anyone else here had any problems with phantom itching? I get it from time to time and then it will go away. Then it comes back. I've been dealing with it for a few months now. I started up on Copaxone again (after being off it for over four years) and I do have the bee sting and itch/welts etc from that, but this is just insane. This just travels around and doesn't require much scratching but then it moves on to a new place. Kind of like having a flying ant under my skin.

I also had a weird thing happen one night where I thought I burned my tongue. I didn't eat anything warm or even spicy. It last a day or two and then went from the middle of my tongue to the tip. Then it went away. There are times i will get that same feeling around the inside of my mouth. Sort of as if i have been chewing on the edges. however it might go away overnight.

brought both things up to my neuro and she just shrugged her shoulder and gave me an odd look. Thought I'd see if anyone else here has had anything else like this happen to them.

Replies

  • sedavis62
    sedavis62 Posts: 18
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    In the past couple of years, I've had buzzing in one side of my tongue. The first time it happened, it just made me laugh. I knew it was MS; what else would do such a bizarro thing? It went away in a day and I didn't tell anyone. Since then, it's returned with varying intensity and duration. It's annoying, but doesn't seem to change things like taste or saliva, so I'm not worried about it.

    As far as the itching, man, that sounds more than annoying. I don't get that, but I do often get the feeling something light is on my skin, like a long hair or something, but nothing is there. I have lots of numbness and tingling all throughout my body; some of it can be really intense to where it feels like a bad sunburn. That's what I'm dealing with right now :(

    I haven't found any meds, steroids included, that change these sensory symptoms, which is a bummer. Steroids only seem to work on muscle weakness and overall fatigue for me, which is good; just not enough. I hope your symptoms abate and you feel better soon.

    Sue
  • Bbwnomore2
    Bbwnomore2 Posts: 225 Member
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    i too sometimes get the itchy feeling
  • katiewondergirlie
    katiewondergirlie Posts: 9
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    Yes, it's very annoying. It does feel like something light such as a cobweb might be brushing against my skin or underneath it. I guess that's one way I know it's no real. Today I noticed that it causes me to have goosebumps pretty much all day. Not a rash since they will go away.

    Are you taking any vitamin/mineral supplements at all? I was having really bad problems with my legs a month or so ago. I would stand up and it would feel as if one of my legs would suddenly go to sleep/ go numb (figure out that sensation to me at least feels more like when they just release the blood pressure cuff) and I was walking a bit like I might have cerebral palsy or what one might associate with that. It'd only last a few minutes. there was sa lot of pain though. One night i grabbed a potassium bottle off the shelf instead of the vit D. Caught my mistake but it obviously wasn't going to be a big deal so I didn't worry. Good thing too! Turns out taking that gave me back my legs for the most part in under and hours. Went from the strange walk, numbness, concrete leg thing, to feeling a bit more like I did before my legs were gving me any problem. Hips working, knees not in so much pain. My primary care doc said that could be due to potassium being depleted by a lot of different meds. So I'm definitely sticking with that for now!

    I've got chronic fatigue too. I think the fatigue with MS is just so strange too. It's hard to explain to people that it isn't alway physical or it isn't always mental and it's never at all predictable...unless you count just having some for of fatigue as predictable.I take adderall now and fave for a little under six months. What a world of difference that has made. Physically and mentally. Without it I feel like i might as well be among the zombies. One of the reasons I think I finally am getting my butt in gear and made it to MFPs when I did. I knew I needed to lose weight, I was just in denial and tooo darn tired to even admit that much. Now I have admitted it and seem to have the energy more days than not to address my weight issue.

    Hope your numbness subsides soon and anyone else reading this is feeling strong today!
  • unicornlady77
    unicornlady77 Posts: 72
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    Has anyone else here had any problems with phantom itching? I get it from time to time and then it will go away. Then it comes back. I've been dealing with it for a few months now. I started up on Copaxone again (after being off it for over four years) and I do have the bee sting and itch/welts etc from that, but this is just insane. This just travels around and doesn't require much scratching but then it moves on to a new place. Kind of like having a flying ant under my skin.

    I also had a weird thing happen one night where I thought I burned my tongue. I didn't eat anything warm or even spicy. It last a day or two and then went from the middle of my tongue to the tip. Then it went away. There are times i will get that same feeling around the inside of my mouth. Sort of as if i have been chewing on the edges. however it might go away overnight.

    brought both things up to my neuro and she just shrugged her shoulder and gave me an odd look. Thought I'd see if anyone else here has had anything else like this happen to them.


    for the last 12 years or so,started before I even knew I had MS,it comes and goes.
  • Benji49
    Benji49 Posts: 419 Member
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    I get a spot on my head - about quarter sized - that will itch for a week and then move a few inches and do it again and then it goes away. Its always in the same spot and the doc has checked the MRI - there is a lesion tucked under there that is supposedly dormant. Frustrating as all get out but I've told myself to ignore it since there is no medical reason for it :laugh: It's just my body reminding me that I have absolutely no control over anything when it comes to MS other than not letting it rule my life.
  • Shygl01
    Shygl01 Posts: 2
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    I actually had gone to my PCP regarding itching before I even knew that I had MS. My boyfriend at the time forced by to go in and get checked because there were times that my itching (usually on my legs) would get so bad that I'd scratch myself until I started bleeding. I've had itching on and off (mostly on lol) for years now.
  • hartland45
    hartland45 Posts: 53 Member
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    I joined MFP last month and am glad to see an MS group within it. I've had the sensory itching you mention for years plus all sorts of other sensory irritations - "bee stings" in my hair, vibrating hands and feet, burning then ice cold feeling. My consultant put me on low dose amitriptylene and I think it does damp it down a bit. The anti-depressant nature of the drug when given in high doses is also beneficial! Gabapentin was also mentioned as a possibility but that seems to related to weight gain, which is the very last thing I want! I have an awful lot to lose, and without being able to exercise it's going to take many months. I've had MS for 30+years and countless IV steroids to get over relapses, but I can still get about a bit, and drive with hand-controls..And AT LAST I'm on a drug really does seem to have slowed down the progression - Tysabri. Still get the itching though!

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