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2nd opinion

Posted , 10 users are following.

IssyR
IssyR

Well, today i went to get a 2nd opinion from another doctor in the practice after completely losing faith in the doctor i've attended for the past 2yrs. I told her of my fatigue, pain and stiffness and how the other doctor didn't actually acknowledge that PMR may be at least partly to blame. I told her about my headache that i've had for 6wks and again not acknowledged by the other doctor, i told her i was worried about GCA...i told her how no matter what i said to the other doctor he put it down to my mental...i'd said i felt self aware to which he replied "you can't say you're self aware...how can you say that...no one knows if they're self aware" which had really upset me at the time as i had a rubbish couple of years (personally) and was pro active in helping myself to get better...i'd been in counselling, i'd got myself a new job, i had looked after me....ANYWAY...the new doctor said "ok we'll get an ESR rate done to see if your PMR could be causing any of these symptoms" i asked about my headaches then she went on to tell me about her gas central heating breaking down but how the engineer managed to fix it but couldn't find a reason for the problem in the first place...!!! as in..i have a headache/pain/stiffness but there may be no cause for it. It really concerns me that no one is interested in checking out my head...other than psychologically...God give me strength...my ESR rate was 13 in November

1 like, 19 replies

19 Replies

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  • Elijo
    Elijo IssyR

    Posted

    Looks like you need to find another doctor.  It is appalling that they treat you like that when you need relief.  sorry you are having these difficulties, it's difficult enough to deal with the PMR.  Good lukck!  Elinor
  • ptolemy
    ptolemy IssyR

    Posted

    Hi Issy I am sorry things are not good. An ESR of 13 is pretty good though. One thing it is probably not a good idea to knock other doctors in the practise unless you are absolutely sure the person you are talking to agrees with you. The trouble is they talk to each other and so you may be labelled as a complainer. Are you on steroids? Have you been diagnosed with PMR or do you just suspect it? 
    • Anhaga
      Anhaga ptolemy

      Posted

      I didn't even have to "knock" the other doctor, although I had the advantage that she had left for another, more distant, practice.  All my new GP had to do was look at the same test results as the previous one, and she decided I needed a few more tests, had me diagnosed within a week, confirmed by good response to pred.

      It's shocking that the doctors are not following up on Issy's headaches.

    • IssyR
      IssyR ptolemy

      Posted

      Hi, i was diagnosed in September '14 had full on symptoms since at least the June...i'm on 7mgs pred...i know what you mean about knocking the other doctor...i think i was pretty low key in my distain. I am soooo fed up as really lets face it we're at their mercy. I read a post last week about alendronic acid which i was first prescribed 2mnths ago...it was saying it can only be taken for 5 yrs so shouldn't be prescribed unless a bone density test has been done...i meant to bring that up with doc today but thing i was distracted by the gas central heating...!!
    • IssyR
      IssyR Anhaga

      Posted

      Hi, i think what they're both saying is my ESR number being 13 shouldn't give me any symptoms. I had taken my grandkids to a party Saturday night not getting home til the wee small hours and of course they were up bright eyed and bushy tailed on Sunday morning...they stayed til teatime and after they went home i felt awful...really sore and stiff and miserable...i was thinking it was my busy weekend but when i went to get my evening tablets i hadn't taken my morning ones...so going by the bain i had on sunday i think i'm very much still in the grip of PMR i don't understand why the ESR is so low though..!!
    • Anhaga
      Anhaga IssyR

      Posted

      My first GP didn't follow up on my test results because she considered them too low to be of significance.  But she also told me my iron was fine.  The new GP said although the inflammatory markers were not high enough to normally be a cause for concern, because of my symptoms she wanted them redone, and other tests as well.  She also said my iron was way down and when the ferritin results came in the number she gave me was 6 which I think is considered rather low. So we do rely a lot on the subjective reactions of the doctors.  You'll hear repeatedly on this forum that the inflammatory markers are not always high in people with severe PMR symptoms.  They are a useful tool but not infallible.  Symptoms have to trump the numbers every time.  I really think my first GP looked on me as a hypochondriac old woman although I was too miserable at the time to detect her attitude.
    • VickieS
      VickieS IssyR

      Posted

      Unless you know what your "normal" ESR, don't necessarily think that 13 is really low. My normal was practically 0, and at 9 I was having horrible, searing groin pain and upper arm soreness. This was before I was diagnosed.
    • penelope10875
      penelope10875 IssyR

      Posted

      Surely, if you are on steroids, the ESR should be low. The Preds is keeping  the inflamation under control, or am I missing something here!
    • IssyR
      IssyR Anhaga

      Posted

      I think that's what has happened, i was very depressed with marriage problems and trying to support my mum and sister who were both ill and then grieving for my mum when she died nov'14 and i think all that time i was soooo low and exhausted i didn't realise that the doc wasn't actually paying any attention to the pmr and it's symptoms...it wasn't until i felt better mentally that i realised there was no real acknowledgement of my physical symptoms but still on my mental health even though i'd sought out talking therapy, took my prescribed anti depressants, dealt with the personal problems we had and found myself a new less stressful job. It offends me that he is like a broken record about the effect of stress on my health and how he feels i have set things aside and not dealt with them therefore causing stress and all that goes with it. My health absolutely was affected by the stress, i had panic attacks, sweats brought on by stress as much as peri menapause and i'm sure a lot more but now i feel well, my councellor and i decided it was time to part company as everything had settled down and the doctor has no interest, i've worked sooo hard to get back on my feet and all the doctor can do is patronise me...

       

    • IssyR
      IssyR penelope10875

      Posted

      Yea i know...AAAaaaaaaaarrrrggh....drives me MAAAAAAAAAD....!!
    • ptolemy
      ptolemy IssyR

      Posted

      Hi Issy, I do sympathise even if the doctors didn't. Had you had a Dexascan to check your bone density before considering something like Alendronic Acid? I am fast coming to the conclusion that you have to check on everything they tell you having been let down so often. To find a good doctor is like winning the lottery.
    • IssyR
      IssyR VickieS

      Posted

      The groin pain thing...i had went to the docs a cpl of months ago because my urine was strong and my abdo/groin ached. I had a urine test done which was normal. When i went back and the doc told me it was normal i said i'd been thinking and maybe i just hadn't been drinking enough as when i was coming in from work i was sooo exhausted i barely moved til bed time and the aches of pmr could be mistaken for the aches of a uti...his reply was it can't be that..all this buzz about how much you have to drink is nonsense Europeans used to roam the plains of Africa so don't need nearly as much fluid as they say....aaaarrrggh...do you understand my complete frustration...i feel as though my care must come directly off his wages or something..!!

       

    • Anhaga
      Anhaga IssyR

      Posted

      Do you have someone you could take with you to the next appointment?  It tends to concentrate their (doctor's) minds wonderfully.  A friend, a clergyperson, a family member?  Just sitting there, quietly, taking notes.....
    • IssyR
      IssyR Anhaga

      Posted

      Do you know i might say to my sister as we've been doctor buddies for 6yrs but usually it's me going along with her.
    • EileenH
      EileenH IssyR

      Posted

      One in five patients with PMR have a normal ESR/CRP even when they aren't on pred. If you are on pred then the blood markers are likely to be low - without meaning that you have no pain. My normal is 4 - 13 would be really high. But there is no real correlation between the blood levels and your symptoms. As someone said, the symptoms always trump the blood levels.

      I think you might need to even move practice - they have got you in a little box because of your history and they don't want to let you out. I have another friend who had a similar problem - but they have now realised she really is ill (not just PMR though). I also had the same problem - I had to leave the practice. I was totally up front with the new one when I went to see if I could sign on - I (and the daughter that had the problem) were seen 20 mins later. That was a while ago and in Scotland but with luck you will find another practice.

      The other thing is - YOU have to manage PMR too, it isn't just the symptoms being controlled by the pred. You have to rest and pace yourself - you cannot continue doing what you did before. Until you calm down a bit nothing will make a lot of difference. I'm well with PMR on 5mg pred - but I could not do what you did at the weekend - I'd be in pieces. Stress of any sort and PMR do not make good bedfellows.

      As someone said - find a reliable friend/family member to take to the doctor with you and make sure the doc listens and doesn't dismiss you as "all in the head" - because I think a lot of PMR patients do get that label, especially the younger ones. BUT you MUST rest too. Even pred doesn't do it all.

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