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Do you ever feel the tingles?

Something my doctors haven’t truly figured out and curious if this is an issue around the community. When I start to do chores or a work out I have an issue of getting the tingles in my body. Almost like an allergic reaction but on my upper body. My arms, back, stomach, chest, and sometimes face. It’s that warm tingly feeling that can last from a few minutes to an hour.
My neurologist couldn’t really figure it out but says I should be fine but I find it to be very strange. Curious to know everyone’s thoughts and I’d they have had similar issues. This has happened in all different climates from New York, North Carolina, and Florida. Doesn’t need to be hot out, just when my body’s temps true gets heated up. I don’t get any rashes or indications of an issue. I know there is heat sensitivity issues but I feel this may be a little different.

  1. Hey wow, this one is interesting! I'm curious to see if others have experienced this too. Could you describe the tingling sensation? Is it like when your foot "falls asleep". - Jada ( team member)

    1. it’s like feeling a million little needles all over my upper body pricking me. So far nothing I couldn’t handle but it’s strange. I’ve tried different body washes and soaps. Doesn’t happen all the time but no explication.

  2. Gi Dan, I have a tingling feeling constantly to like a mild electric shock running down the length of my right arm, into my fingertips. Same eith my right leg. Left side is pretty paralyzed to so I don't notice it on the left. I also get it shooting down my neck and spine when I tilt my head down, like what placing my chin on my chest. When my diagnosis was MS to this was just considered part of the neurological symptoms. One neurologist back then even asked if I had strange sensations when moving my neck, like it was normal for the disease. I've never really thought much about them. Maybe I should if it's not a usual symptom in NMOSD. They don't seem to indicate any significant change or relapse for me, just an odd sensation foing on in the background.Thanks for sharing.

    1. Hi Richard. I also have weird sensations when I move my neck, tingling vibrations that run down my spine and legs. I spoke to my neurologist about this symptom. It's called Lhermitte's Sign. - Haleemah

  3. i have the tingly feeling in both my arms, sometimes in my right buttok going all the way down my right leg, this sensation feels like i am just about to get pins ans needles but not full blown hope you understand this. i also get an intense tingly sensation in my right thigh that then goes up and across my pelvic area then stops at the top of my right thigh and i get a very intense pain that hurts so bad for only short period then goes down my right leg turning my right calf freezing cold. am i unike with these pain spasms ?

    1. I completely understand the frustration you’re going through with the spasms and pain. I have the same kinds of pain and spasms. Have you told your doctor about these pains?

    2. Yes i have told my local GP (Doctor) who try to help but have very little knowledge of NMO so i had / have to contact the specialist nurses who give advice and recommended changing some of the medication which has helped in reducing some of the pain spasms but increased fatigue.

  4. Hello everybody! I have not been diagnosed yet but my neurologist said that the MRI findings looks more like NMOSD than MS and I’m waiting my Aqp4Ab and MOG results.

    I have bad tingles in all my limbs, my ears and sometimes in my belly. Arms and thighs are the worst. Those tingles hurt a lot. These have been ongoing almost four years now. Sometimes I get them many times a day and sometimes there can bee even few weeks very calm and feeling normal.

    I know it’s caused by myelitis but what I’m trying to figure out is that if my disease is activating when I feel those tingles or is it just a symptom that want go away. That’s why I ended up to this forum. 😀

    Two years ago I had also L’hermitte’s Singn but I don’t get it anymore.

    I wish all the best for all of you and greetings from Finland.

    1. Hi! I’m so sorry it’s taken so long to get a proper diagnosis. It depends on the person, if it’s new symptoms it can be something that is a sign of a disease that’s active but for me since i’m on treatment now i have symptoms that won’t go away ever. This is because treatment will reduce the inflammation and prevent future attacks but it will not heal the damage that the disease has already caused! i have both the tingles and the Lhermitte’s sign even after six months of steroids & two sessions of rituximab.

      I’m sorry I couldn’t give you a proper answer but I hope what i’ve said has helped! I really hope you get a definite diagnosis and the right treatment. In the meantime, don’t hesitate to reach out to me or anyone else on this platform if you have any more questions! - Haleemah (team member)

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