Home Forums General Discussion scalp tingling, numbness

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  • #308213
    Anonymous
    Participant

    Hello all – does anyone with dermatomyositis experience a numbness and tingling sensation on their scalp/ear/back of neck area. This is driving me crazy. It is a horrible feeling and I’m wondering if anyone has a way to treat it. Since my scalp is so dry I’m thinking about dowsing myself in coconut oil or something to relieve the weird feeling. It’s like an itch but not quite.

    #371748
    Anonymous
    Participant

    Hi Lindilu,
    I would first check the easiest things before you start doing medical investigations .Sometimes when you have a sitting work it can happen and when you spend too much time in front of the computer. Check your position and the position of the computer. Try to lift your computer up /put it even on the books/, so the angle you are looking at it will change. Another thing try to keep your head warm for some days, even when you sleep at night and see if it happens.
    All the best.
    Linda L.

    #371749
    PhilC
    Participant

    Hi Lindilu,

    What you described sounds to me like a response to treatment. You may need to temporarily decrease your dose of doxy. You’re taking doxycycline, right? How much are you taking?

    An older discussion that may be helpful:
    Numbness and Tingling?

    By the way, I have something similar on the left side of my upper back. The tingling sensations come and go. I do not have dermatomyositis.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #371750
    Anonymous
    Participant

    Thanks for your reply. I did switch to minocycline. Maybe that’s why? I just went back to doxy this morning and thought I’d go to three days a week just to be safe. I am assuming it’s the meds. I’m hoping it’s not a flare of my condition as I TRY to come down from prednisone. It was truly an upsetting sensation to be having when you’re trying to work, talk to people, interact. I will see what happens over the next day or so. So far this morning it appears to be lessened but I guess time will tell. Does anyone know how long it takes the minocycline to leave your system?

    #371752
    Jillian
    Participant

    I have tingling and numbness right side of head neck and shoulder. Don’t take any meds yet. I diagnosis myself with Systemic Scleroderma. I am on several waiting list to see Doctor. Hopeful it will be soon.

    #371751
    Maz
    Keymaster

    @Jillian wrote:

    I have tingling and numbness right side of head neck and shoulder. Don’t take any meds yet. I diagnosis myself with Systemic Scleroderma. I am on several waiting list to see Doctor. Hopeful it will be soon.

    Hi Jillian,

    Just replied to your other post regarding doctors. Self-diagnosis of a rheumatic disease can be a tricky thing. Before seeing an AP doctor, if AP is your chosen course of treatment, it is wise to get a diagnosis as treatment protocols can vary between rheumatic diseases in terms of dosing and antibiotics used. A regular rheumatologist can usually run the labs necessary to determine if you are showing any disease markers for scleroderma. However, it’s worth noting that in early disease, sometimes these markers do not show up and rheumatologists are not likely to provide a diagnosis of scleroderma until there is definitive evidence in symptoms and labs. We have heard from folks here who have clear signs/symptoms of scleroderma (e.g. skin hardening, Raynaud’s, curling fingers and/or difficulty swallowing), but negative labs and they are not given a definitive diagnosis. This is probably because the conventional palliative treatments used for the disease are pretty hefty and aren’t used until symptoms become difficult for the patient.

    In other words, an alternative to seek answers right away is to simply see a local rheumatologist and have them run some simple labs to do a complete rheumatologic work-up right away. A simple ANA test, for example, can provide important clues about what type of rheumatic disease a person may have (or not). If labs are all negative, it might be worthless going to a leading scleroderma clinic unless you have clear signs/symptoms of the disease. This is because the likelihood is that they won’t recommend any treatment based solely on tingling and numbness on one side of head and shoulder (maybe the usual “go-to” prednisone) and more likely to refer you to a neurologist.

    I hope some of the SD people here will chime in on this and also offer their insights for you. Hope you find your answers soon, Jillian.

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