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Scalp Pain- but GCA has been ruled out

Posted , 7 users are following.

greentea26
greentea26

Some moths ago I started getting a very disconcerting pain/ sensation on my scap around the crown of my head. Had a bit of a panic that could be GCA - doctor duly investigated and it has been ruled ut.

After a ime this abated but still felt it occaisonally - now it has returned on a daily basis.

So this is not a headache - it is a kind of fizzing sensation around the crown of my head which is sometimes quite painful thogh not always.

It's definitely not neuralgia which I've suffered from before and I am quite sure it is not caused by stress as suggested by my GP

My gut feeling is that it does have some connection with my PMR though I don't know what.

Just wondering really if anyone else has experienced this or had any thoughts on whether it might be linked to PMR?

0 likes, 16 replies

16 Replies

  • amkoffee
    amkoffee greentea26

    Posted

    My suggestion is that it is not PMR related at all but possibly alepacis areata instead. I have this condition and although I would not discribe it exactly the feeling on my scalp as pain it is tender and often red where the hair falls out. The crown is often the first place for that to happen. I would check to see if there are any small round bald spots in the area. If not then, my hypothesis is all wrong.
    • greentea26
      greentea26 amkoffee

      Posted

      Hi - thanks.

      No there are no bald spots as yet. My hair has thinned somewhat after some time on pred but after a while it did not get any worse.

      I will keep checking in case I do develop anything.

  • snapperblue
    snapperblue greentea26

    Posted

    How was GCA "ruled out?"  I did not know that there is a way to do that!  You can confirm it with a biopsy of the temporal artery, but a negative biopsy just tells you that giant cells were not detected... they might be present in a different part of the arterial system.

    Is the scalp sensitive to touch? For example, to combing or brushing your hair? Or do you have the sensation all the time?

    Also, is it on both sides of the head or on one side?  It sounds like you have this sensation on both sides, while GCA would typically start on one side, as far as I know.

    This information might help others answer your questions. Your symptoms do not sound typical to me, but GCA is really dangerous, so you don't want to take any chances.

     

    • greentea26
      greentea26 snapperblue

      Posted

      Thanks - yes by "ruled out" I mean that tests were negative.

      The doctor said my symptoms were not typical of GCA but nevertheless took the possibility very seriously, as you say it is dangerous.

      The first instance was several months ago now. After about 6 weeks as practically a constant it went away barring a flash every so often.

      Now it has come back and I get it every day - though it is not ever present - it comes in waves.

      It is right at the crown of my head - not one sided.

      My scalp is not tender (though I think it was slightly when at it's worse)

      It does not hurt to brush my hair.

    • EileenH
      EileenH greentea26

      Posted

      Unless you had a biopsy there aren't any tests that accurate - and even the biopsy is 100% certain if it is positive. If it was negative - it doesn't rule out GCA, it just means they didn't find the signs of inflammation they were looking for and there are several reasons for that.

      However - most people find hairbrushing uncomfortable. It certainly isn't typical of how people describe the scalp problems in GCA.

  • EileenH
    EileenH greentea26

    Posted

    On what grounds was it ruled out as being GCA?
    • greentea26
      greentea26 EileenH

      Posted

      Because my ESR was only 2 (the lowest it has ever been) when I was suffering from it badly first time round in late December/early January. Dr was adamant that unlike PMR, GCA can not present without raised bloods.Also presentation of pain was not felt to be typical.

      Said biopsy was not necessary and to be fair the problem did go away shortly after that only to resurface recently.

    • EileenH
      EileenH greentea26

      Posted

      GCA can and does present with normal blood markers. 

      Giant cell arteritis with normal ESR and/or CRP is rare, but not unique! by A Grzybowski,  and A Justynska

      The table in the article gives references where normal markers were found in GCA.

      There are articles describing "unique" cases where GCA was accompanied by "normal" markers - "Unique" means only one - far from the truth,

    • greentea26
      greentea26 EileenH

      Posted

      Hi Eilen - thanks for this. I think Ptolemy may have found the answer but I will keep my eye on it. If I get any further symptoms I will at least know that it is not impossible to have GCA without raised markers.
  • ptolemy
    ptolemy greentea26

    Posted

    Hi greentea

    The sensation around your scalp could be parathesia anxiety syndrome. I may be totally wrong but look it up to compare your symptoms.

    • greentea26
      greentea26

      Posted

      Hi Ptolemy

      I have Googled this and I think you may be on to something. I'm especially struck by the description of the sensation of fizzing and bublling. Also by the fact it can come in waves.

      I'm at a loss to know the cause though. Except for migraines which I don't get very often these day, I do not suffer from any of the medical conditions listed.

      I'm also not under any particular stress at the moment. Except maybe the "stress" of trying to reduce and it not going so well- I suppose there could be a connection there

    • ptolemy
      ptolemy greentea26

      Posted

      Hi greentea, it was just a thought. At least you know all your symptoms and medical background so can discount it if it is a mad idea of mine.
    • Anhaga
      Anhaga greentea26

      Posted

      It's interesting what we may be suffering from without even knowing.  It was visiting a physiotherapist for help with PMR that I learned I had "bad tone" in the muscles of my back.  She told me that my muscles were like bricks!  A few sessions of "dry needling" sorted that out.  But this was something completely unknown to me and from which I may have suffered for a very long time.  Yet she told me that in vulnerable people this kind of spasmed muscles can lead to vertebral fractures!  Perhaps we get so used to a certain condition in our body we don't even notice it, it's just part of the background of our normal life.  Like a child who has always had a headache because of allergies doesn't know until they are treated and then they know how how much better they should feel.  Hope your symptoms can be easily resolved.

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