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Contributors' Brief Histories

Posted , 46 users are following.

EmisModerator
EmisModerator

A thread for users to put a precis of their story.

EMIS Moderator

9 likes, 200 replies

200 Replies

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  • Whisper2003
    Whisper2003 EmisModerator

    Posted

    Thank you for prompt replies. When I feel stronger will change to another GP practice. Difficult to get any appointment with mine! I am near Sevenoaks, Kent. Can I insist on a referral to a rheumy? 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Whisper2003

      Posted

      There is a support group that meets in the Kent area, I believe at two different venues, one being in Keston.  Let me know if you are interested and near enough to go along and I can send you contact details via a personal message on this site.  If you have difficulty getting referral to a rheumy, some people have said the best money they ever spent was paying for an initial private consultation with a rheumy, following which very often they have been switched to the NHS, continuing to see the same rheumy.
    • EileenH
      EileenH Whisper2003

      Posted

      If there is a question of GCA then you should be sent to a rheumy as an emergency - that means being seen NOW not in a couple of months time. Which possibly means a phone call to the hospital rheumatologist and a referral letter pressed in your hand as you head for A&E (it isn't just accident - it can also be admissions and emergencies). GCA is a medical emergency and should be treated as such. 

      As MrsO has said - no "browbeating" is acceptable and try another GP in the practice - they can't make you see a particular one to suit them. Not sure about your "right" to a referral any more - but the chap at Chertsey is worth the journey!

    • Whisper2003
      Whisper2003 MrsO-UK_Surrey

      Posted

      Thanks MrsO. I wish I'd found this help earlier as I have felt very lonely with this condition. Keston is very near to me so I would appreciate some details from you please. A private consultation sounds tempting, will try to find out cost. I phoned GP this morning for emergency appointment. She's on holiday so had telephone consult with duty doctor - through a 3rd party as can't get my point accross with the voice thing - he didn't want to interfere with her treatment but if really bad to take 20 mg prednisalone. PMR symptoms bad especially in the morning now since attempted reduction but no headache/visual disturbances. Will take Eileens advice if they reappear and present at A & E.Why is this all so difficult?
    • Whisper2003
      Whisper2003 EileenH

      Posted

      Thanks Eileen. Will heed your advice for rheumy. I see  cardiologist on Thursday and will ask his advice too. Travelling is difficult as he advised a 999 call if palpitations occur at all! its all making me a little nervous!
    • EileenH
      EileenH Whisper2003

      Posted

      When I first had the symptoms that eventually turned out to be atrial fibrillation my GP said that too - as the mother of a paramedic I felt it was a bit daft but in retrospect it did make sense. Paramedics carry the essentials - they have a 12-lead ECG on board so can immediately check far more than a GP is able to do and they are able to make decisions themselves to transport to a heart centre without delay whilst having drugs available for support and direct access to a cardiologist for advice. Going to the GP wastes far too much time - and they are always available so travelling isn't perhaps as much of a problem as you'd have thought. If he was really concerned he would have kept you in hospital for longer.

      I didn't ever call 999 - maybe I should have done because when it finally went totally pear-shaped I had several hours of tachy at 230 with intermittent bradycardias on 2 consecutive nights in response to a medication that was being used for back problems - luckily I was in hospital anyway but there wasn't an intensive care bed free here and no cardiologist on site! A 2-day "sort out your back" turned into 3 weeks of "sort out your heart"! If the call is "chest pain and DIB" they do turn out pretty quickly - so keep a letter with your problems handy to give to anyone if you are ill in a public place so you can give it to someone to call 999 for you and for the paramedics to know what is going on. And have an ICE (In Case of Emergency) number in your mobile phone so they can get a family member or friend to come to you if necessary. 

    • mrs_k
      mrs_k Whisper2003

      Posted

      Hi there, I called 999 and the paramedics where fantastic.  I was wired up and in the hospital so fast is was amazing.  Yes, it turned out I have A/F and it is well under control with Beta Blockers and Warfarin.

      You would be amazed how many people, and I don't mean people with pmr or gca,  have A/F.  I discovered it is a very common problem. But it must not be left untreated.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Whisper2003

      Posted

      Whisper, I have sent you a personal message, as promised - please let me know if you have any trouble locating it.

       

    • Whisper2003
      Whisper2003 EileenH

      Posted

      You have had a bad time of it! It must have been very scary for you. Thank you for ICE tip and letter is a good idea  - though my last rescue was from the woods walking my dogs carrying only my phone - wet and muddy!
    • Whisper2003
      Whisper2003 mrs_k

      Posted

      Yes, I agree about the paramedics. Am now on Beta Blockers too. Did you have pmr/gca before A/F?
    • mrs_k
      mrs_k Whisper2003

      Posted

      No, I was nearly a year into remission and off pred completely from GCA but I was then  75 years old.

      A/F is not uncommon at all in people over 65, which astounded me.

      I ought to tell you that prior to going into remission, I had had the scans recommended in the guidelines for people with GCA on both the aorta and pulmonary arteries, and they were absolutely fine.

      As the cardiac guy and nurses said, "we can do so much with hearts now than we could ten years ago, but A/F we still don't know why".

      I also asked the question of the Lead Medical people on PMR & GCA and they all said, "nope nothing to do with pred, pmr or gca".  I believe them and I am a cynic.

       

    • EileenH
      EileenH Whisper2003

      Posted

      This is really an answer to you and MrsK but this daft new improved forum format makes that impossible!

      The cardiologists here are of the opinion that my a/f is due to damage to the sinus node (the bit in the heart that sends the signal to beat to the rest of the heart) and that it is very likely the autoimmune disorder that underlies PMR that did the damage. It isn't certain - but what IS certain is that patients with autoimmune arthritises such as RA have a higher incidence of a/f and a few other similar problems.

      My a/f was certainly there after a couple of years of PMR, how soon it started I don't know, I just had palpitations ("it's your age") and unidentifiable woozy spells. I was never aware of anything really nasty until the reaction to the drug - but that was nasty!!!!! But some things that I'd always associated with the PMR disappeared after being put on the heart medication. So maybe NOT the PMR after all! 

    • Whisper2003
      Whisper2003 EileenH

      Posted

      Yes I had the same comments but I have my doubts as to causes! Doesn't always agree with the doctors!
  • anne90299
    anne90299 EmisModerator

    Posted

    I work full time and was quite active despite having Restless Legs Syndrome. Four years ago my right knee swelled after playing tennis. Then both knees swelled. Was seeing chiropractor for stiff neck, stress and 'wear and tear'. He told me I had bursitis. Then my back became sore and stiff, followed by hips and shoulders. Xrays showed degraded hip joints and anterolisthesis of L5/s1 vertebrae. Hands now very stiff and weak. Every day is different for pain. GP referred me to rheumatologist. Osteoarthritis diagnosed. Bloods didn't show raised ESR or CRP levels so despite me having many symptoms of fibromyalgia/polymyalgia GP says it's 'just' osteoarthritis and prescribed tramadol which I can't take with my job. I'm planning to reduce hours but feel a bit helpless.
    • EileenH
      EileenH anne90299

      Posted

      Hi Anne and welcome!

      Tell your GP that about 1 in 5 patients with PMR have "acute phase reactants within normal ranges", especially younger patients with PMR (though you don't say how old you are ;-) )

      Tell him tramadol is useless to you if you want to work and ask him very nicely if he will try you with the Bristol "test" of a vit C for a week/15mg pred for a week/vit C for a week. Patients with PMR respond dramatically to the pred, achieving a 70% improvement in symptoms within a few days and the symptoms return in a similar time frame when the pred is stopped. It is described in the paper at the final link in this post on this site:

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

      I can't give you a direct link or it will disappear for ages until approved. Print off the paper and take it to your GP, it is aimed at him. The Bristol group are a bit ambivalent about the normal ESR/CRP - but I can assure you that it is very possible to have pred-responsive PMR without them being raised! I spent 5 years looking for a diagnosis as a result.

      However - you saying your pain is different every day does raise the question of another inflammatory arthritis where the PMR symptoms are merely an extra symptom and when I read your description of your knees that was actually my first thought. I saw a rheumy who was dismissive of osteoarthritis as the cause of the hand pain. 10 years on there is no sign of any osteoarthritis. The next rheumy ignored my report of a 6-hour response to 15mg pred and wanted it to be ANYTHING but PMR.

      First of all, try the GP for a pred trial as I and the Quick and Kirwan describe. If he won't play ball - is a private rheumy an option? Many will add you to their NHS list if it is appropriate and if you say where you are someone may have a recommendation. A few people have found that paying for one private consultation was well spent money.

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