I think it can be divisive that patients need to check on their doctors' diagnoses and treatment pla

Posted , 8 users are following.

My doctor was very resentful that I knew more than she did about my illness. No patient should be expected to diagnose themselves but this is the case with many patients, especially those suffering from Giant Cell Arteritis who are dismissed by GP’s when they should be referred to a specialist. Even doctors, when unwell, see another doctor for diagnosis and medication. No patient should be expected to prescribe for themselves either, especially without access to previous health conditions, blood test results, scans, etc., and without medical training and experience. Telling your doctor how to treat you is a shocking indictment on the training of our medical practitioners. It is necessary to campaign to receive better treatment and you can do this in several ways. PMR and GCA are often referred to by high ranking specialists as being a condition of 'the elderly' - a disrespectful and illegally ageist term which can mean 'over the age of 50'! If you are unhappy with the treatment you receive from your doctors, contact your MP, the Health Secretary, your local Healthwatch. Each magazine for GPs and hospital doctors covers a number of illnesses and should cover autoimmune illnesses more often that they do but because they have little to offer in the way of expensive drugs, they are swept under the carpet. I have been shocked that GCA, which can result in stroke, heart attack, dementia and other very serious life long disabilities, is dismissed unless someone has a headache in their temples. This is because if someone does have pain in their temples, they can go completely blind, and this can result in a legal claim for damages which would affect the doctor. GCA can stay in the arteries for at least a decade after the last symptom has disappeared, causing lesions, weaknesses and artery damage which can affect vital organs. However, it is impossible to prove after the event, that any artery or organ damage was caused by GCA. I probably have artery damage due to misdiagnosed GCA and I am very angry about this indeed.   

 

 

2 likes, 12 replies

12 Replies

  • Posted

    If this forum can help raise awareness of GCA and PMR, that would be a very good thing.  Those of us with just PMR are very glad to be "forewarned" to watch for pain in the temples, jaws and for a tender scalp.  From what I read, one should go straight to the emergency room with these symptoms.  Can you do that in UK?  We can here. 

       No doctor should resent educated patients.  And no doctor is all knowing- that is why specialists exists.   But it is also good to attribute what you have learned to the site from which you learned it.  There are so many horrid places for health care advice, that you need to reassure them that what you learned came from a reputable source.    For example, I might talk about what I have learned from members of this forum or from the Mayo clinic, etc.  My GP had a good laugh when I said people from this forum disliked their "rheumies" for trying to disprove their GP diagnosis.  And she sited a similar experience that she had had. 

  • Posted

    Just one more thing to add- PMR is not rare. 0.6 per thousand (in the age group >50)  is about as common  lung cancer. The incidence ALL cancers is 4 per thousand.  My guess is that it is also often missed because most people don't even think to complain to their doctors about stiffness and just put it down to another aspect of old age.  I know my stoic mother would never have complained. 
    • Posted

      It seems your percentage might be wrong as .6/1000 is 6 %. I haven't found a person here, hearing of only two people.  I do appreciate this site, very educational!
    • Posted

      Incidence of a disease is usually written as a number /100,000.

      The incidence of PMR is approximately 60/100,000.

      If we divide both sides by 100, we get 0.6 per 1000. 

      if we divide  both sides of the top numbers by 1000, we get 0.06 per hundred, or 0.06%, not 6.0%.

             Incidence is NOT prevalence.  Incidence is how many people have a new diagnosis of a disease in one year.  Prevalence is how many people overall have the disease.  So you mustn't get the two mixed up.

       

  • Posted

    I think now a day we have to stay on top of what we have and not alway give in to Drs., they can make mistakes. ALso al long the lines not well know, whan I tell people what I have NO one knows what it is!
  • Posted

    I too have only known 2 peoplr who had it a short time 1 or 2 years, but no one else.   M Dr says few and far between from out of no ware. To all the suffer with I it is tough, but this sights make me feel less alone and I have learned from it.
  • Posted

    I was told some time ago, by a consultant friend of mine, when I was in casual conversation with him, that GP's are 'jack of all trades' and are not normally expected to have answers to everything - the clue is in the 'General'.  This is why if they have any doubts you are sent to a specialist.   My own regular GP didn't get it correct when I was describing the classic signs of PMR on my first visit, I went back a week later as I had not improved and saw another doctor in the practice and he sent me fora blood test but said he had a good ideal what it was but wanted it confirmed first.  He saw me just 2 days after the results came back and instantly arranged another appointment for 5 days later to see how the steroids were doing.  He explained, after I told him I was 95% better and mobile again, that his diagnose was correct and passed on his findings to my regular GP.   When I saw my regular GP a few week later, he was very apologetic and had now 'clued' himself up on PMR.   I have a good relationship with him, and over the months have had conversations about treatment and dosage, and my 'research' has been very well received by him.  He asked me how I'm doing and if there is anything he can assist with!!   I'm not a medic, my profession was until retirement an Electronics Engineer.  He like a lot of professionals are willing to continue a lifetime of learning and not claim to know it all - would be good if they were all like him?
  • Posted

    My post subject matter was about GCA not PMR. I agree that using another GP at the same surgery is often sought, even for the smallest matters, as GPs do specialise and have different qualifications and experience. However, if a GP misdiagnoses GCA, this is a much more serious matter. Blindness, heart problems, strokes and dementia are just a snippet of the possible long term consequences of insufficient medication and living with the anxiety of these disabilities is distressing with a condition which is known to cause anxiety and depression. What is needed is for GPs to be educated, for opticians and others who might see a patient with GCA (which is a medical emergency). Try telling a GP that their colleague misdiagnosed you with an illness which damages your arteries and you will find them very defensive indeed because they all want to avoid the no win no fee route to improving their treatment of patients.  
    • Posted

      My comments, although based on my experience of PMR, are still valid for any disease or treatment.  The bottom line is; if you are not 'happy' with what your GP's is diagnosing then seek a second opinion before it's too late!  Not all Doctors have their heads in the sand, and the vast majority are willing to listen to patients thoughts and concerns.  I have never, ever even tried to tell my GP what to do, but just talking to him from my own experiences of symptoms and effects.

      Perhaps my experience of GP's is different, or I'm in a practice that is not staffed with 'tin gods'. I tend to have a peer to peer conversation with them, but respect that he/she is the 'expert' in their field of work as I am an 'expert' in mine. I come back to my original comment that your GP is not necessary a specialist in what you may have or suspect, others in the practice may well be - if not then his/her job is to send you to the local hospital to confirm or otherwise.  If you have problems with your own GP I could suggest you change to another doctor or practice?  

    • Posted

      One of the problems Oregonjohn here in the UK is if you see a GP, they expect to diagnose and treat you, because this is what they are trained to do. If you diagnose yourself, and suggest a course of treatment, they either defer to your better knowledge or are distainfully dismissive. Personally, I want to see doctors for a consultation who are knowledgeable and professional and do not stint on cost of drugs or procedures. I would like to be able to trust in the treatment I am given and I have not found that to be the case so far. I have changed my GP and gone back to square one - 10 minutes to explain 8 months of hell with the previous GP. I'm down for having 'thick notes' now! 
    • Posted

      Hi - I left the States over 50 years ago!  Have resided in the UK most of that time since but have lived/worked in Germany for a number of years, plus I worked for 32 years with a company based in France and have been there on numerous occasions. 

       My PMR experiences are purely based on my local NHS practise and hospital, but I have always had a good relationship with my GP who I've known for over 20 years.  He knows where I come from professionally - hence my comment in the last post ' I tend to have a peer to peer conversation with them, but respect that he/she is the 'expert' in their field of work as I am an 'expert' in mine.'  

      I've always found that getting on the 'right' side of any professional starts with not telling them what you think they aught to do but 'suggesting' - nicely!!  

  • Posted

    I think you are one of the lucky ones, Oregonjohn. For those without the special relationship that you speak of, it can be an anxious and depressing trial trying to get responsible treatment, especially if they have inflammation of their large and medium arteries. If the inflammation is not properly controlled, sight and hearing loss, increased risk of stroke, heart attack and dementia are just a few of the disabilities that are possible. There is a huge emphasis on having a temporal artery biopsy where they cut an inch out of the inflamed cranial artery (I had pain both sides so for me I would have had a double TAB), stretch and suture the two ends and give the patient an extremely high dose of prednisone to compensate. This procedure is only 50% likely to reveal the offending giant cells. Doctors are no longer listening to patients, only interested in 'evidence'. However, you can lose your sight without ever having a headache, or without ever having high inflammatory markers. GCA is a truly terrifying illness. I had typical PMR and GCA symptoms but because I have high eye pressures and glaucoma in my close family, high glucose, and am highly strung, I did not want high dose pred so I said I needed to avoid the high pred needed after biopsy. I was given 15mg and my heart pain was dismissed as acid stomach and pain in the groin and in what might have been my femoral arteries was described as sciatica. I kept asking for a higher dose of pred but it was radically reduced by 2.5mg every 2 weeks and I had some sight loss in both eyes. When I did get to see a consultant it was only to cover up any problems the GP had caused and he refused to treat me unless I had a biopsy. I had been on Pred for five months. I had also been taking asprin (which might have caused bleeding). He was very abusive, shouting "Do you know you could go blind?" "What sort of treatment do you think you should have then?" etc. The consultant who he said trained him was my next port of call. He said I had no physical problems and was hearing voices! This was part of the cover up. He also said I was 'in remission', a stupid term if ever there was one. My CRP was 32 at the time. Now I am unable to get a referral to a consultant because they don't want to discover that I have damaged arteries caused by all this mishandling. I am young to have GCA and could live for 30 years with the dangers of severe disability so I've made my will and downshifted and cleared out my cupboards awaiting my final hour. Every time I say goodbye to my friends and loved ones, I really mean it! 

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