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temporal arteritis or something else ongoing problems

Posted , 9 users are following.

sharon90860
sharon90860

Hi everyone, i have posted a few months ago, and am still having the frustration of being in continuous pain and feeling ill..my background is that i have been having joint pains and squeezing type pains,then feeling ok one minute, and the next feeling like i am going to get a really bad cold and am feeling really tired and generally unwell, and have a temperature. this was (after 25 years of been told i was just picking viruses up) diagnosed as fibromyalgia.  i got the diagnosis and then just carried on as before, managing the daily pain with nortriptaline.  i then had incidental finding of 'high signal foci in white matter' after i had a ct scan to try and find out why i was going deaf in one ear.  no conclusion was found and i was offered a hearing aid.

fast forward 18 months to February 17, when i had severe stabbing pain on the top left of my head above the temple which lasted most of the night (i have suffered with typical migraines about 6 times a year) so i took a couple of sumatriptan.  nothing seemed to shift it,.  the day after i started getting a throbbing type pain above my left temple, which then led to a numb/bruised/pulsing feeling, when i lie on my left side it feels bruised and like there is something in it,i was quickly referred to a neurologist, who organised and mri scan, he said there was no change from the ct scan regards the findings. i asked him what the high signal foci in white matter, meant,  he just said anyone over 50 would have these findings of changes. and said i had a prolonged migraine, this is nearly a year ago, i have a been tried on about 5 different medications, nothing took it off. it is there 24 7, i only have to gently touch my face and it is tender.  as i go above the temple it hurts even more,and will start throbbing more.  this is then occasionally followed by a tingling from front to back, my left ear has pain inside it, the same throbbing feeling has now been happening for about two months on the right side.  i am sat here now, with the throbbing above the left and right temple.  the neurologist now wants me to go to pain management as he is still saying it is a prolonged migraine.  i am so upset and frustrated.  the tingling in my head is happening more, and more and more i am feeling tired and 'ill' with the same squeezing pains i have always had, but a wierd severe squeezing has been happening in my arm pit for a couple of months.  i have contacted a group of doctors who can help with diagnosis, but obviously a lot of people contact them. so it isnt guaranteed they will look at my case.  i am going back to gp to ask for a second opinion and am hoping they will send me to either a different neurologist or a rheumatologist, i have been in so much pain over christmas.  i felt so ill the other night i went to the out of hours gp who said after hearing all my symptoms, that i had a virus, iam in tears with frustration, and have pain in the left and right side of my head.  

i have been to a and e a couple of times over the last eight months, one doctor mentioned temporal arteritis straight away, but as my bloods were ok he said luckily it isnt that and sent me home.

i am so frustrated.  could you have temporal arteritis for nearly a year and not be diagnosed.

happy new year to everyone that has to come onto a discussion.  sadly i dont have the money to go private.  X

1 like, 20 replies

20 Replies

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  • Anhaga
    Anhaga sharon90860

    Posted

    Hi Sharon.  I'm so sorry you have such difficulty getting the doctors to take your symptoms seriously.  I think it's unforgivable they've been apparently so dismissive.  Where do you live?  I'm sure the more knowledgeable members of this forum will be along with some advice in a few hours.  I can believe you could be undiagnosed for so long, you would not be alone in this.   

    • sharon90860
      sharon90860 Anhaga

      Posted

      thanks so much for your reply.  i have seen neurologist 4 times, since feb 17 and he is still saying its a migraine.  i have it from when i wake up to when i eventually go to sleep.  just come off phone to GP, can pre book an appointment for 26th Jan (i have to try and fit it round work as i dont drive and live two busrides away from gp) or i can ring at 8 am, and book, but then work arnt impressed or very sympathetic (to say i work in the NHS!) thanks, i live in Doncaster, yorkshire.

      take care

    • EileenH
      EileenH sharon90860

      Posted

      Ask for an Occupational Health appointment - that's what they are there for.

    • sharon90860
      sharon90860 EileenH

      Posted

      bosses told me they would send me to occy health three times, the last three times i was off !  my boss hasnt seen me today about my absence on friday, so yes, i am definately going into her tomorrow and ask again to be sent to occupatiental health.

      thanks eileen. X

    • sharon90860
      sharon90860 EileenH

      Posted

      hi well i saw occupational health and they were no help whatsoever, i had to go because i had been off work so much, but was told they are not there to diagnose me or help with diagnosis, that is the doctor and consultants job !  so i am still trying to find out what is wrong
    • sharon90860
      sharon90860 Anhaga

      Posted

      no..its with me every day...i try and carry on my job,helping with grandkids etc, then i get a bad throbbing/pins and needles in head, and it reminds me again :{
    • EileenH
      EileenH sharon90860

      Posted

      But they ARE supposed to help with any problems at work - whether you have managed to get a diagnosis out of the NHS or not. The NHS gets worse and worse.
  • jennybshaw
    jennybshaw sharon90860

    Posted

    So sorry to hear of your suffering.  I really think this sounds like Polymyalgia Rheumatica with Giant Cell arteritis which is treated with a high dose of Prednisone to start, then graduating downwards over a course of 2 years.  You certainly need a Rheumatologist immediately.  Tell them that you have a doctor friend who believes this is PMR with GCA.  That is how Ali got diagnosed.  You are not constantly having viruses.  I am positive this is PMR.   I thought I was catching viruses every week for 2 years before the Prednisone.  I haven’t had a ‘virus’ ever since I have been on it.  You may also have GCA which will clear with Prednisone.  It really doesn’t sound like fibromyalgia at all.  Please don’t delay as GCA can be very dangerous.  Please keep us informed.  Good luck .❤️
    • sharon90860
      sharon90860 jennybshaw

      Posted

      thank you so much for your reply, i said the neurologist on second visit, could it be GCA, he laughed and said no.  he is only young, (well to me, i am 54!) and maybe he not experienced enough, as per my reply to the above lady, i am in process of asking for a second opinion.  its so upsetting and frustrating, the pains that are accompanying the headaches since last feb are totaly different pains to the ones i have been getting in shoulder, arm pit, and hips since the head pains and 'fizzing' started.

      take care

  • EileenH
    EileenH sharon90860

    Posted

    You could have giant cell arteritis for over a year and not be diagnosed and the doctor is incorrect on one point: up to 20% of patients with GCA/PMR do not have blood markers that are outside the normal range. 

    You need to see a rheumatologist if that is to be considered but if you can't afford to go privately then you will have to go through the system I'm afraid. Even when patients have raised blood markers it can be difficult to get a diagnosis as they also have fixed ideas about the symptoms if a patient's complaints don't fit with their textbook image. 

    Even if you can't go privately, if we knew whereabouts in the UK you live we might be able to make some suggestions.

    • sharon90860
      sharon90860 EileenH

      Posted

      thanks for your reply, i am so upset and frustrated, as per my answer to jenny, i am in process of getting a gp appointment to ask for a second opinion, everytime i see her she says i have to listen to the neurologist, it is depressing me so much, i am at work today, but am in pain, luckily i can just sit and dont have to be wondering around much, its spreading to my ear, my armpit feels like it is on fire underneath, yes i had read that about your markers, its like talking to a brick wall here.  i live in Doncaster, south yorkshire, i am waiting for a reply from the consortium who help people who have been misdiagnosed.  i will ask gp to refer me to rheumi.  however, it was rheumi that diagnosed fibro in 2014, (after having the mystery viruses and pains for over twenty years) and when the GP wrote to him in 2017, about swollen red knee, he wrote back and said i have already told this lady she has fibromyalgia, i d0 not wish to see her.  so here i am getting worked up about asking for a second opinin referral from GP and if she refers me to rheumi i am then worried about seeing the same guy as before he said he didnt want to see me !  work are not sympathetic, to say i work for nhs, and i get raised eyes when i say i am not very well and am in pain.  

      take care

    • EileenH
      EileenH sharon90860

      Posted

      Both Leeds and Sheffield have good rheumatologists who are specialists in PMR and GCA. You are entitled to be referred there if you wish and it is practical - it is a direct train for both. Whoever you see it should NOT be the ignorant creature who doesn't take into consideration that even someone with fibromyalgia may develop something else. That is appalling. Can't say I have ever heard of a swollen red knee being a symptom of fibro. More likely RA - which could of course be what he may have misdiagnosed you with. Fibro is far too often a diagnosis for lazy doctors.

      Ah well - I'm not surprised at your colleagues attitude. My entire family works/worked in the NHS!

    • sharon90860
      sharon90860 EileenH

      Posted

      thanks for your reply elaine.  ive kept the letter from him refusing to see me, you can understand my hesitation in wanting to be seen by a consultant at my local hospital.  yes i am still getting the blooming red swollen knee, but ive been getting it for over two years, before this head tingling/stabbing bruised feeling, the pains in the shoulders, neck and hips have only started since the pain in my head last feb, i know they are totally different to the squeezing pains that i kept describing to my gps for about 20 years, to be told every time that i have an unknown virus.  my last employers made me go for medicals etc and didnt believe that one day i could be at work feeling great, and the next day i would have a day off stating flu like symptoms, and the next day i could feel fine again.  these other symptoms have been here since feb last year.  yes, i totally agree with you regards the fibro diagnosis.  take care, and thanks again, i will ask my gp to refer me to sheffield, i have no faith whatsoever in the consultant at doncaster.  after he refused to see me again, because of giving me that diagnosis.

      any one had any experience of consultants at Sheffield? X 

    • EileenH
      EileenH sharon90860

      Posted

      There is another PMRGCA forum on HealthUnlocked - and I know there are a few people from Sheffield there. One of them goes to Leeds to see Prof Sarah Mackie who is a lovely and very lateral-thinking PMR/GCA expert who often picks up that it may not be PMR/GCA and there is a multi-disciplinary team there. I'm not sure if Sarah is still working out of Chapel Allerton at all, she may just be at Otley - which if course makes it more difficult for you. But the others are at Sheffield I believe.  I think they are hoping to get a support group going though if you are working that isn't easy either. There's a link to the forum in this post:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      as well as a load of other useful things.

      I have to say - your description of the pain/symptoms coming and going doesn't convince me it is PMR/GCA - when is your pain worst?

    • sharon90860
      sharon90860 EileenH

      Posted

      hi again, thanks for the other link, i will take a look at that.  the pain and bruised type feeling on my left temple since feb (and on my right for about two months) is there all day every day, it throbs and feels like a bruise even though i know it isnt a bruise, then if i touch anywhere on my scalp on left or near my temple, it makes the pain more intense, then about every ten minutes or so there is a worsening pain in my left side above my temple.   then it will get a tingling/fizzing type feeling in a sort of line from front to back on the left side of my head, and has now started doing it on the right, the tingling isnt there all the time but the bruised feeling is, there isnt really a time that it is worse on my head, but the stabbing/squeezing in my hips and under  my armpit, seems to be worse in a morning, and the bruising feeling is worse when i lay on my left side of my head.  i am also getting pins and needles down my left arm and sometimes my left leg. i feel constantly tired, and just feel unwell. X thanks again for your answering, i am beginning to feel like im going mad!
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