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Please help!!

Posted , 9 users are following.

joanna99037
joanna99037

I've been suffering from headaches for over 8 months now, been to GP God knows how many times and have been given 5 different medications. Seen a neurologist who was no help whatsoever! I googled my symptoms and temporal arteritis came up. Went back to my GP yesterday and told her I think this is what I have. She didn't really believe me as she said I'm too young to have it (I'm 25) Anyway she agreed to send me to have my bloods taken. The next available appointment isn't for another 2 weeks! I've been reading up about it and have read that it's important to start treatment straight away. Surely I can't wait 2 weeks for a blood test? I've suffered everyday for the past 8 months and can't bear to wait any longer! I just need to feel better again, and by reading other people's stories it looks like the tablets make you feel better almost straight away!

0 likes, 26 replies

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  • EileenH
    EileenH joanna99037

    Posted

    If you google headaches you will come up with all sorts of awful diagnoses! If you google any symptoms the awful diagnoses are the ones you will find - and the likelihood of having them are fairly small but in the meantime you have scared yourself to death.

    I'm not going to say you are too young to have it but, while it is possible, it would be very unusual at the age of 25. The vast majority of people who develop it are over 50. Your doctor has agreed to do the next step and do a blood test. If there was anything you had told her that really concerned her she could have sent you to A&E at the hospital.

    The people on the forum who say the tablets make you feel better straight away probably have polymyalgia rheumatica - a related but different illness. And believe me while they do make you feel a lot better because the pain and stiffness is relieved it isn't a miracle cure even at the relatively low dose of pred used in PMR. In GCA (another name for temporal arteritis) the dose used is much much higher and is used for up to a few years - it isn't just a week's course of tablets and everything is hunky-dory. This all comes with a lot of side effects so no doctor would just use it without very good reason.

    GCA isn't just headaches - there are other symptoms which you don't mention which are part of the diagnosis and in fact a neurologist would probably have recognised GCA. In some countries it is neurologists who care for GCA patients. If you were to have any of the other GCA symptoms then your doctor would refer you to a specialist again. 

    But let me assure you - there are no illnesses for which just popping a pill will make you feel totally better again. I know this is what the modern world thinks will happen but I'm afraid the real world is a bit different.

     

  • tina-uk_cwall
    tina-uk_cwall joanna99037

    Posted

    Joanna, pre pmr diagnosis I was furious and desperate when my GP surgery told me that the next available blood appointment would be in 6 weeks as they were so understaffed. They justified such a long wait by saying that I wasn't an emergency, but seeing as they didn't even know what was wrong with me how did they know if I was an emergency or not!!

    anyway that's all by the by, I'm simply mentioning it as I appreciate just how anxious you must be feeling as you have these symptoms and the medical profession currently have no answers.

    however, although I am not an expert, it is highly unlikely, but not impossible, but highly unlikely that you have gca, so calm right down re the medication question.

    have you been to the opticians. Have you requested a head scan? If at the end of the day your GP cannot find an answer then they must explore every possible avenue by referring you to other specialist departments to establish a diagnosis.

    i'm sorry that I have  nothing else to add but I hope you get an answer very soon. Regards, tina

  • sue-dorset
    sue-dorset joanna99037

    Posted

    Hi Joanna,

    I can understand your frustration at not getting anywhere with a diagnosis and at having to wait for 2 weeks for a blood test.

    You say you have headaches, do you mean migrate type headaches or what? GCA head aches are quite specific. (I know) Is your scalp painful to touch, even gently; washing or brushing hair very painful; jaw claudication (painful to move, almost impossible to eat without crying); pains like having a tight bandana around your head; blurred or disturbed vision in one or both eyes?  Do you feel fatigued, not tired, but fatigued. Do your shoulders and/or hips hurt so much that you can't turn over in bed at night? Do you have pain that normal painkillers don't come near to alleviating? 

    If you can answer yes to some of the above then you may well have GCA despite your age, and you need to get back to your GP and convince her. 

    Keep a note of what pains you get, and when, then you'll have all the info when you need to refer to it. 

    I hope it's not GCA, and that you soon get a diagnosis.

    • joanna99037
      joanna99037 sue-dorset

      Posted

      I have every single symptom that you've mentioned!

      My doctors just don't seem to be in a rush to help me be diagnosed!

    • EileenH
      EileenH joanna99037

      Posted

      If that is so then you really do need to insist on an in-depth discussion with your GP and ask to be referred to a rheumatologist. 

      If, in the meantime, you could go to an optician and ask them to examine the back of your eyes to see if there is any sign of trouble there. If you have any worse visual symptoms then don't hesitate to go to A&E and ask for help there.

    • sue-dorset
      sue-dorset joanna99037

      Posted

      Hi Joanna, just wanted to make sure. In that case then agree with Eileen, get an emergency appointment (if possible) with optician. Explain your symptoms when you make appointment, he may make the decision to send you to A&E, which mine did. Otherwise go yourself. Don't wait for  GP, just go. Hope all turns out okay for you. 
    • EileenH
      EileenH carmel83758

      Posted

      Not sure what health system you are in - but private healthcare in the UK is NOT cheap. I can't afford it and I'm fairly well off.
    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Yes, definately not cheap. I had my bloods done privately because I was given a 6 week waiting list for bloods and they cost me over £400.00! Regards, tina
    • david14272
      david14272 EileenH

      Posted

      on the subject of blood tests, in staffordshire where one resides one can get a blood print out from Drs and go to a number of nhs places to have bloods taken.the results are then sent back to Drs. free of any charge.
    • ptolemy
      ptolemy david14272

      Posted

      David I think that is true in most places, it is just the wait for the blood test that takes time. Do you have a drop in system where you are? I have to book an appointment. 
    • david14272
      david14272 ptolemy

      Posted

      the small hospital that i use has : cashier No 3 please:system. you might have to wait 10mins, and results are back at surgery in couple of days.on this point the NHS delivers.
    • ptolemy
      ptolemy david14272

      Posted

      How wonderful. It now takes me about four weeks to get a blood test. The small hospitals have all disappeared too! 
    • EileenH
      EileenH ptolemy

      Posted

      Here is much the same as David's system. The doctor writes the script and you turn up at the hospital or the village clinic between 6.30 for 7 and 10am, get a number and wait your turn. If you time it right you are just emerging from the book-in and your number for the vampire is flashing! Most things you can pick up the results the same day or it is sent straight to your GP via the computer system (one that works). And the GP is a turn up and wait like it used to be in the UK - if you really need to see the doc then you wait. I think she also does appointments for people who can't get off work. She also takes as long as it needs - and that means you don't go back 5 times to get an answer. The GP are also GPs here, fancy stuff is done in a hospital clinic which saves the GP practice getting so far behind.
    • ptolemy
      ptolemy EileenH

      Posted

      I live in the back of beyond but we can have blood tests at the surgery.  I think you could probably go to our local hospital, but it is quite a way and inaccessible by public transport, apparently the NHS were given the land by a millionaire many years ago and decided to build a hospital, the fact it was in totally the wrong place was not taken into account. Also the parking is impossible, talk about road rage, people stomp around the hospital having had fights trying to park. Not a smile in sight. The hospital has recently been put into special measures. 

      I remember in the good old days when you could get a GP appointment by queueing up on the day at the surgery and you were given a number. Those were the days.

    • EileenH
      EileenH ptolemy

      Posted

      Except for the special measures that sounds like a lot of hospitals...

      Even though the hospital OH worked at was at the centre of a transport network, it was a work of art to get there using public transport! When it was built, the first "all PFI" hospital I think, although the new hospital was lovely there were fewer beds and fewer parking spaces - because of course everyone wants to catch 3 buses minimum to get to an out patient appt or visit the wife. rolleyes and you can have a heart bypass as an outpatient...

      The best bit was that a section of the old hospital was to be kept as it was "only" 10 years old (the windows were falling out but whatever) so despite my husband pointing out repeatedly that his department was on a different level to the main hospital so what was going to happen when bringing very poorly patients from the wards to him for diagnostic tests and they had to go OUTSIDE to get from the A&E entrance to his department it was completed and then they went Oh-errrrrr and had to build a sort of stair lift that took a bed. 

      Plus if you went to the OOH doctor which - quite sensibly - was based at the hospital, an ambulance had to be called to take you the 50 yds from the OOH clinic to A&E if you needed to be admitted.

      You couldn't make it up... eek

    • ptolemy
      ptolemy EileenH

      Posted

      I sometimes feel as if I am living in a parallel universe when I hear these stories! Just unbelievable.
    • EileenH
      EileenH ptolemy

      Posted

      Ruled by TB?????????????? In said hospital it cost something well in excess of £450 out of the budget to have an electric socket replaced because of PFI - and that was in the Medical Physics department where several staff were electrical engineers.

      I'm so glad I'm not the only one who feels that way...

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