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Crawling sensation on scalp

  • By Tinklecrawly

    Hi people, I joined this site last year because it was suspected that I have MS, but after an MRI (showing 2 small lesions) and a (useless) 10 minute consultation with a neurologist it was concluded that I suffer from silent migraines.

    By now though I have serious doubts about this diagnosis, since I also have symptoms which don’t match with migraine (sudden debilitating fatigue, muscle spasms and ‘the hug’) but with MS, alongside most of the other symptoms mentioned on this site.
    I also have this intense crawling sensation on my scalp, like an electrical current rippling over my head, mostly from the back towards the front. I would be happy to hear if anyone else in here recognizes this since I’m wondering if it is one of those odd symptoms which aren’t on the official list but are common among patients anyway.

    Apart from that I also experience a sort of ‘brain zaps’ especially when I’m lying down at night to go to sleep. It’s a really bizarre feeling, like my brain is jolting inside my skull. This waxes and wanes over the weeks and months, like the other symptoms. Does this sound familiar to anyone?

    Thanks for reading so far, I’m trying to get some more clarity since I am contemplating on getting a second opinion. Your input is greatly appreciated.

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  • By Erin Rush Moderator

    Hi Clarity! I am sorry your diagnosis hasn’t offered you any helpful treatment options. I think you are well within your rights as a patient to seek a second opinion. If you are interested, you can check out our sister site dedicated to migraines to see if your symptoms and issues line up with migraine symptoms — https://migraine.com/.

    Also, there is a diagnosis called Clinically Isolated Syndrome (CIS), which you can read more about here — https://multiplesclerosis.net/what-is-ms/clinically-isolated-syndrome-risk-progression/.

    Your crawling and zapping sensations could be any number of things, as people living with MS do frequently experience a variety of tingles, shocks, and numbness through out the body. Here is some information on MS related pains and tingles that you may find interesting — https://multiplesclerosis.net/symptoms/pain-chronic-pain/.

    While we cannot provide medical advice, for your safety, I would reiterate that you can definitely seek a second opinion if you are not happy or confident in your original diagnosis. It’s okay and smart to advocate for yourself and your overall health!

    Good luck and please keep us posted!

    Best, Erin, MultipleSclerosis.net Team Member.

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  • By MS2006

    I was diagnosed with RRMS in 2006. I have the tingling, crawling sensations on my scalp. I also have the brain zaps. A sharp, sudden stabbing pain in my brain. It can be once or a few times in succession. Very strange sensations. I hope you had a second opinion from a MS neurologist.
    Take Care,
    Shari

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  • By Tinklecrawly

    Thanks Erin and Shari. I’m going to have a look at the links Erin, thanks for those.
    Shari, thanks you for sharing your experiences, it is really helpful to know from first hand that it could be related to MS. I still haven’t had a second opinion since I’m completely broke. I will get some money next month and am thinking to spend it on a consultation though I’m very sceptical since the consultations I had up to now were completely useless. Both neurologists were hardly interested in my complaints, but I’ll try and find a good one via the patients organization in my country.
    I hope you do receive an adequate treatment Shari, take care.

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  • By ficutlo

    Hi Clarity. Last year I had two major electric shocks in my brain. Brain scans didn’t reveal anything. I went to my Chiropractor. He said I have loss of curve in my neck and some degeneration of one of my vertebrae. Our bodies can heal both with proper chiropractic adjustments and some daily physical rehab. The shocks stopped immediately after the chiropractic adjustments. Re crawling feeling, I had that too, I got rid of it by applying Frankincense oil to my scalp four times per day (you have to mix it with carrier oil, read up on it before mixing). Frankincense oil can heal your nerves, it’s been around for thousands of years for a reason b/c it’s a “holy ” oil with multiple applications, it even works at the cellular level. I was very frustrated with MD’s also, you’ll get much worse or die before you find one that truly cares or is open minded. Good luck to you!

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    • By Tinklecrawly

      Thanks for the tips ficutlo, I already went to the chiropractor in the meantime and though it didn’t completely solve the tingling it definitely got less.
      I just bought some Frankincense oil and will try it, if it doesn’t work out at least I will smell wonderful:-).

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  • By Binkyboo

    Research Morgellons Disease. Read through a few websites before forming an opinion, as it is different for everyone. However, there are staple symptoms. Good luck

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    • By Tinklecrawly

      Thanks for the suggestion, but I don’t think it is morgellons Binkyboo. It isn’t a skin thing but more of a neurological phenomenon, it feels ‘electric’, like it is coming from the nerves.

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    • By tmpatto

      Everything everyone has mentioned I’ve been struggling with for over a year now and scans came back with nothing and doctors keep telling and treating me for anxiety and panic attacks and migraines. But I continue to explain it’s none of those things but since nothing in tests they run come back showing a problem they just kind of have up and it’s frustrating spending all the money to get someone to listen. I would like to keep up with this forum to see how everyone else is handling the issue and the answers they get.

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    • By Tinklecrawly

      Tmpatto, same here, I’m not getting anywhere with doctors. I guess I have to study hard and find out myself what is causing all of these symptoms.

      My family doctor suggested I try another neurologist but I can’t stand any of that anymore. I now contemplate on a Lyme test, since I had it in the past. Maybe it is still there and causing all of these complaints.

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    • By ShelbyComito Keymaster

      Good call @tinklecrawly! I’ve encouraged this community member to share their experience here and have also removed the personal email for everyone’s safety and security. Thanks so much for the help! Best, Shelby, MultipleSclerosis.net Team Member

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    • By ShelbyComito Keymaster

      Hi @patriciajudybanks, thank you for your comment! We’re so glad to hear you found something that works for you. It’s important for us to note that while this treatment may work for some, different people may respond differently. It’s best for people to discuss their options with their doctor and/or specialists before trying anything new. Thanks again for sharing! Best, Shelby, MultipleSclerosis.net Team Member

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    • By Tinklecrawly

      Did patriciajudybanks post her suggestion? I don’t see it anywhere.
      By the way: discussing new options with my specialist isn’t really an option since I don’t have one at the moment.

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  • By MForell

    Im not diagnosed with MS, I found your post with google.
    Im having the exact same thing. Electrical crawling feeling, like chills moving on my scalp, in the top of my head and sometimes on forehead and between eyes, also sometimes a sensation like theres a pencil behind my ear. It doesnt hurt, but is very disturbing.

    Strange thing i noticed, it decreses if i plug my ears with earplugs, quite fast, in 5-10 minutes.Try the ear plug thing and report back to me. maybe im just imagining but it seems to help. I also have some tension neck but i cannot imagine it doing this. This sensation can stay away for few days or a week, and then it comes back out of nowhere and stays from few days up to week. It wont occur as much when you lay down, and almost completely gone when you sleep. But in a while after getting up, it starts.

    Its like chills in your head, some kind of disturbance. Desperate to find out what this is..

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  • By Tinklecrawly

    Thanks for sharing MForell, I’ll try the earplugs, would be great if it would solve this thing! That would be at least one symptom less. Do you have any other neurological symptoms? Like head pressure or electric feeling in the rest of your body?

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  • By MForell

    Only in head/face. Like i said, the preassure can feel exactly like you have a pen behind your ear, or a little higher on the side of head. Sometimes it seems to be on top of eye or between eyes like theres a band around head. And the tingling chills usually move around. When its at its worst, i can get brain zaps too. that sudden tremble in your brain. The scalp thing is not anxiety, i know because it wont go away with diazepam etc.
    But it sure does cause anxiety.

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  • By Becky57

    I was diagnosed with MS 9 1/2 years ago.
    I have had what I call the creepy crawly on my scalp that would cause an increase in my anxiety. I was already on an anti-anxiety medication, and we increased my dosage, which seemed to fix the problem. However, I have been having occasional episodes again in the last year. I find that it’s also a signal that I am very tired and need to go to bed. It’s gone in the morning.
    I have also had what I call humming a couple of times along the left side of my body, which is the side most affected by the MS. When I mentioned that to the neurologist, she had no clue what I was talking about. It’s not painful, but it is annoying.
    I have also had a series of off and on of random places on my legs that feel like I was just poked with a pin. It only occurs once in that spot, and then a few minutes later it will happen in another spot. It doesn’t happen all the time. I can go days without it before it happens again.

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    • By Tinklecrawly

      Becky57, tmpatto and MForell, I recognize all the things you mention, which on the one hand is comforting because I now know I’m not the only one with this set of complaints and that they all belong together to one syndrome. On the other hand it is worrying since it adds to my suspicion that I might have MS after all (got a negative diagnosis two years ago). Since a few weeks I on and off also have troubles with swallowing, not food in particular but in general. I’m not drooling yet but sometimes close to it. What bothers me most though in my daily functioning is the debilitating fatigue and lack of concentration I’m experiencing.
      My GP suggested I make another appointment with a neurologist, but I’m quite weary of that since the previous two were hardly interested in my complaints and it costs me a lot of energy to handle that, not to mention the 385,- I’ll have to pay. Not sure what to do right now, will visit the GP again and discuss it again.
      Thanks for sharing your experiences, it’s really, really helpful!

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    • By Carol

      You should always get a second opinion. Try another neurologist and if that one doesn’t give you the right diagnosis, then try another neurologist. Do not give up.

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  • By tmpatto

    The anxiety meds they have me on is propranolol and a generic lexapro. They also have me taking 1k mg of B12 for the tingling and numbness. I was taking it daily as suggested but it made me feel worse and panicky all the time to where I couldn’t even get through a work day without having to leave or sit in the bathroom with an ice pack to calm down. So now I take the B12 once a week. I wouldn’t say the anxiety meds didn’t help me at all. It helped with the attacks I was having because of these issues but the issues never quit. I get the crawling ehat feels like in my head but also on the back of my scalp. My arm gets tingly and then numb. And I just feel so tired and exhausted I feel like if I’m not at work I’m in bed lying down and I’m only 24 and shouldn’t feel this tired. I haven’t seen a neurologist or anything yet as I wasn’t sure if I needed to be referred to one but also money is a factor. I appreciate keeping up with everyone else’s comments and diagnoses of the same issue.

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  • By ron.tc

    Hi MrForell, I been getting these strange feelings in my scalp as well. It’s Ben about a month. I haven’t been diagnosed yet. It all started with being very itchy all over at night and very itchy in the head.. at first I suspected I had scabies and went to a dermatologist and gave me a cream for the body. The itching has gotten better but not
    Completely gone.. and now the feeling in my head is almost everyday, feels like electricity or static. I did blood work and all came up good, did a brain mri but without contrast and all looks normal, about 10 months ago.. I went to a neurologist but with a different complaint.. cold feet and sometimes numb.. but he said it’s all in my head.. that I’m fine! Very frustrating, my feet still get cold and numb at times.. not as much as before. Now I’m thinking in getting a Lyme test and based on that .. go see a different neurologist for a second opinion. I’m a 35 y/o male. Those are the only symptoms I have for now. Somewhat healthy. Any suggestions will be appreciated it. Could I have Ms?

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    • By MForell

      ron.tc,

      Im still having the shivers on back of my head, forehead and sometimes on top of eyes.. Im 40 year old male. This is not stopping i waited too long, gonna take lyme bloodwork tomorrow and see if i have neurolyme from old unnoticed bite.. if negative, im pretty sure then that i have MS. This starts every day slowly after getting up from bed, the crawling shivers on the head. Also i get nausea working on computer looking at the screen?? Also my right eye is not normal. Vision is blurry sometimes and its watering a lot. the shiver was also on my left leg one day. All i can think of is MS or Lyme. Im terrified at this point.. gonna go for lyme test tomorrow.

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    • By ron.tc

      Thanks for the follow up, I did get a bite in my arm about 3 months ago at the beach, 2 weeks after that is when the itching in all my body started.. and I thought it could be scabies, but I’m doubting. Please keep us updated with your Lyme results. I’m gonna get it
      Done this week as well. I been reading and it’s a 2 step test. Wish you the best, I’m very worried too.

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    • By MForell

      I have never noticed anything bite me, and this eye thing points pretty much to MS symptoms for what i have read.. Gonna take the first bloodtest tommorrow and see if they indicate positive, then on to further tests.. but i highly doubt this is lyme. No joint pains at any point. Well see.. good luck to you too.

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    • By ron.tc

      Hi Mforell, wondering how your Lyme year went? Did you get the results? I was not able to get mine this week.. and the soonest appointment for a neurologist is at the end of March.. so frustrating and upset at the medical system. I’m going to keep looking for answers and I hope you get your diagnosis soon. I been getting these sensations in the head every single day for the last month.. lately some days are better that others but not completely gone! Keep us posted.

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    • By Tinklecrawly

      Considering a Lyme test: don’ trust the results of the Elisa and Western Blot, they are notoriously unreliable. On lymedisease.org you can find more info on this.
      I myself tested negative on both the Elisa and Western Blot. Shortly after that I ordered an LTT-test (google it) and it returned positive.

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    • By MForell

      Tinklecrawly,

      The problem with LTT-test is the opposite, its known to give false positives. Also its not aviable in my country.

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    • By MForell

      Hi,

      Test came back clearly negative. Not sure if thats a good thing, was kind of hoping this to be resolved. My symptoms are same as yours, stay away for few days or decrease, then comes back. Im stil not 100% sure if this could be from tension neck but thats wishfull thinking i quess.. Since theres nothing to lose im gonna go to massage to check out my neck and after that i have exhausted all the possible reasons for this, except MS. Do you have neck tension?

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