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Can I get a second opinion?

Posted , 7 users are following.

carla46402
carla46402

I am 43 and following a recent series of blood tests my GP was sure I had inflammatory arthritis and referred me to the Consultant Rhuematologist. I am in severe pain in my hands, wrists, feet and knees. I was a bit upset when I saw the Rhematologist as her focus seemed more on my weight and efforts to lose weight than any else. For example, she didn't ask anything about family history or anything like that, which I assumed she would. Arthritis is extremely common in my family, my mum and aunt are both currently on meds for Polymyalgia Rheumatica. I am overweight and I am trying to lose weight but I just felt I was viewed as a fat person responsible for my own aches and pains. The rheumatologist took further bloods and arranged a scan. The scan was of my right wrist and hand, which of all areas is the least effected, but none the less still painful. I have today received a letter from the hospital to advise the scan showed no inflammation (is it possibly because I've been taking anti inflammatories since this investigation started 6 weeks ago?) and that whilst my CRP and ESR levels are raised that this is probably due to my weight. I feel so upset. Don't get me wrong, I'm not looking for RA or any other medical complaint but I know myself that something is not right. I'm in constant pain and for someone who doesn't like taking pain killers for a headache, I am taking Neproxen everyday just to get through. I'm not a pill popper and nor do I want to be, but I just don't know where to go from here. I basically have been given no diagnosis, although GP believes differently and therefore don't know what to do know about the very real symptoms. Any advice would be most gratefully received. Thank you

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  • cheria
    cheria carla46402

    Posted

    GPs aren't qualified to take care of someone who has RA needs, and yours does not sound like someone who has the sensitivity and dignity you need for your care in other areas as well.. It is not uncommon to ask for another physician within the practice to treat you due to the way she makes you feel, or to have your records transferred to another doctors office entirely. It is often helpful to research reviews of doctors you are considering. Never settle for less than what you want in terms of sensitivity and care. You are deserving and your pain deserves to be taken very seriously without inferior consideration and care.
  • lyy13133
    lyy13133 carla46402

    Posted

    Nothing unusual I'm afraid. Even so called "good" rheumatologists don't move beyond the NICE advice. Try asking for more blood tests and ask them questions about why the ESR would rise if you have extra weight. Makes no sense at all. Alternatively, the only option seems to be to pay to see someone. This seems to be the only way to have time and explanations for your condition. I am really sorry you have gone roug all this, but nothing surprises me. If you go to Arthritis care you may be able to find where your nearest support group is located and they may offer some advice. 
    • carla46402
      carla46402 lyy13133

      Posted

      Thank you for your advice. I feel so lost at the moment, sitting in limbo with pain/meds but being told there is nothing wrong. I mean, I had to have my hair cut short because holding a hairdryer was so painful, that's not because I'm fat!!

      My GP has been really good, in fact when I had the bloods done I received a call the very next day to say my ESR, CRP and bone function were all abnormal and he immediately did the referral and prescribed Neproxen to help me through until a firm diagnosis made. He was sure it wS RA. I'm going to try going back to my GP to ask for a further referral. My mums rheumatologist is seemingly excellent and actually works from my nearest hospital. X

  • loulou282
    loulou282 carla46402

    Posted

    Hello Carla, so sorry to hear of your pain, from my experience of this disease it is very hard to get a diagnosis especially r/a. I have been waiting for years as the symptons was not to bad but the last yr 18 months this disease has seemed to have progressed really quicky and now i can hardly use my hands and can hardley walk. I have my rheumatoid factor as negative but raised inflammatory markers. Im due for a full bone scan tomorrow. All i can suggest is read up as much as you can about the different types of arthritis. To me it doesnt seem to easy to diagnose and even more harder to manage. You still have this whatever its called. Im in constant pain and on methetrexate but nothing works. It a long hard road to get what your looking for i think . I hope your rheumy is more sympathetic to you next time. I think if you get a good one you are lucky. good luck hun xx
    • carla46402
      carla46402 loulou282

      Posted

      Hi Loulou, so sorry to hear about your pain and problems with diagnosis. I hope your scan gives you some much needed answers and a more robust/effective treatment plan is established.

      I guess I thought a diagnosis would be easy and managing the pain etc would be the difficult bit. My GP was so sure and in fact when I asked what the Rheumatologist would do, he responded saying that they would sort my treatment plan. Like it was a done deal. I know GP are not the experts in this instance, but his knowledge of me/family history I would think gives him a good basis for diagnosis. I'm just worried about work, not the job but I have to park so far from work. On a temp basis I have been given a priority parking permit, which has been a godsend. It means I can park closer and as the pain is most severe in the mornings, I am able to make the shorter walk. I was advised through occupational health to apply for a blue badge. I suggestion that upset me greatly, but I could understand why. No I have no diagnosis, or rather a diagnosis of being fat and once my permit runs out I don't know how I will get into work each day. I'm worried, scared and lost and feel so angry that even when I told the rheumatologist about my hairdryer and the fact I can't apply eye make up because my hands hurt too much, I have no grip in my hands and I struggle each and every day that she has come back with the diagnosis she has. Sorry to ramble on. X

    • linda17563
      linda17563 carla46402

      Posted

      My sister has been like you for 14 months now, and hates seeing the Rheumatologist, because she only talks about her weight, I went with her last time, and she said to my her, you must halve your portions!....to which I replied, if she could walk, and move about she would lose weight! So find out her problem, treat her and things might change!!...she has inflammatory arthritis, which I think because it`s mainly her knee (very stiff/painful) hands, wrists, feet...it will be RA....eventually.  She has lost a stone by practically starving herself...Methorexate was like poison to her...so it`s like you I suspect a waiting game!  Her readings are not raised eother...Next time take someone with you  (perhaps you have the same Rheumy!).....Good luck....
    • loulou282
      loulou282 carla46402

      Posted

      I know its so difficult to do anything and get anywhere. I forgotton what its like to feel normal. I cry alot and like you feel lost and to have no grip in my hands/wrists. Ive had to bite the bullet and i gave up work in january as it just got to much, now im depressed as feel now that i am indeed disabled and that in itself is horrifying and upsetting. I sleep most of time and read about it on the internet. I had trouble with my feet last year and then i decided i would try and loose weight to see if it helped. I weighed 14 stone then and went down to 12 stone. my feet did get better for a while but having given up smoking in oct and not being active im now back to 14 stone and my feet are terrible. im having a flare every 2 weeks. Im so glad i gave up working now so at least i can get up at my leisure and take it easy. I only see my specialist every 3 months so they not helping at all. Are you in england?

       

    • carla46402
      carla46402 loulou282

      Posted

      Oh god Loulou, I'm so sorry. It's such an awful thing to deal with.

      Yes, I'm in the UK.

      I love my job and don't want to have to look for something else because of the parking situation, but without any diagnosis I am stuck. I can't apply for a blue badge (as much as I don't want to because I want to try and remain mobile) but that would be the only way to get parked closer to work. I completely understand your frustration and feelings of being lost. It's like the body is screaming for support and I'm being told there is nothing wrong!

  • Light
    Light carla46402

    Posted

    It's quite possible that her concern about your weight was because a heavier body is harder on the joints and if the joints are already inflamed, she might have thought that reducing your weight could also contribute to reducing some of your pain.

    Almost the first thing my RA doctor told me was similar.... if I could reduce some weight, it wold be easier for me.

    It is also true that a family hisotry of RA and other auto-immune conditions could contribute to a sharper diagnosis, but in the end your symptoms are what count.

    Sometimes doctors rely too heavily on blood results, and if they contradict how you feel, you may have to be a little persistent. In some cases it does take a while to get a diagnosis, so don't despair.

    Just keep on pursuing every angle you can.

    • carla46402
      carla46402 Light

      Posted

      Thank you Light. I do understand the weight concern and initially when the pain started in my feet, I did say to my doctor it's probably my weight. It was only when I started with the pain really bad in my hands that I realised it wasn't all weight. I have joined slimming world and have lost 10lb so far (3 weeks ) because I want to do everything possible to help myself. The problem is the rheumatologist seemed to only focus on this and asked me no family history questions but instead what I was doing to lose weight. My bloods do show inflammation (abnormally high ESR and CRP) levels, which is why my GP was so sure, but the scan of my hand did not show inflammation, which could be (?) because of taking anti-inflammatories for weeks before the scan. The letter from the hospital reads"there are no signs of inflammation in your right hand or wrist. The ESR and CRP levels are raised, however I would attribute this to your weight". There is no follow up, no meds recommended for the pain... Nothing! I don't think I'm wrong in saying that basically any pain, regardless of where it is or the raised blood levels have been taken into account. I actually said to my mum and my GP after the appointment that I felt that rheumatologist took one look at me and had determined her diagnosis. If what she is saying is true and there are no signs of anything, why I am unable to get through a day without meds? Sorry but I feel so frustrated and I think you're right that it will take time to properly sort but the tone of the letter I have received is very much a "shut the door on the way out" and no follow up, further investigation planned, hence I wonder if I can request a 2nd opinion or ask to see another Consultant.
  • donna82193
    donna82193 carla46402

    Posted

    Hello

    Its sounds awful what u are going through. My doctor said im morbidly obese. I know I need to lose weight but im 5 ft 8 inch and 14 1/2 stone. Its hard when the pain hits and your so very tired. Ive been referred to a consultant who thank god is lovely. Im sero negative progressive RA. My doctor still does not believe the diagnosis and refuses to give me painkillers! I have to wait to see consultant and he gives me a 3 month prescription.

    People in the health profession need to realise we are real people and not lazy.

    Good luck x x x

  • daniela12054
    daniela12054 carla46402

    Posted

     Have you been tested for Lyme Disease? If you do a google search of RA and Lyme you will find out a lot of information about how many people are misdiagnosed with various illnesses, when it it actually undiagnosed, untreated Lyme that is causing their symptoms. 
  • kim94523
    kim94523 carla46402

    Posted

    Hi Carla, Welcome!  I am new to the site and the diagnosis too but I have been "coming down with it" for five years.  I, like you, have pain in all those places.  And I, like you, am overweight and blamed all my problems on that... my doctors did a little and I did a LOT.  It was RA all along.  So, I am trying to lose weight just to help my joints carry me around a little easier but you tell those doctors, "Maybe the reason I can't lose weight is because I am in SO MUCH PAIN! 'It's a chicken and the egg thing,' let's address the pain, then I can focus on weight loss!"  Demand better care in a respectful yet assertive way, and you will get it.  You must be your own advocate.  I start out every conversation with a doctor, I know I am overweight and I am working on that but, I have been this weight for 15 years and here's what's changed...." Just a suggestion.  The other people on this site know best as I am a newbie.  Good luck to you!
    • carla46402
      carla46402 kim94523

      Posted

      Hi Kim,

      Thank you so much for your support, sharing your story and giving me such sound advice. I'm going to make an appointment with my GP and talk it through with him. He's been supportive so far, so I hope getting a further referral/2nd opinion will be supported also.

      I hate the fact of how the rheumatologist looked at me when she saw me, she spoke to me like I was a bit stupid and incredibly lazy. Neither is true. I work full time and until last year was managing to work full time and study for my degree. I hate the thought of my aches and pains affecting my life or my work and like you, will do everything to help myself, but I need them to listen!

      I will keep you (and everyone else who has been so kind and taken the time to offer advice and support) updated, but thank you and I wish you all the very best. X

    • kim94523
      kim94523 carla46402

      Posted

      Hi Carla, no doctor - especially a doctor who deals in specialty, systemic, debilitating diseases like RA - should condescend a patient!!  It is unacceptable.  Yes, go back to your GP and ask for another referral to a different Rheumy... is that allowed in the UK?  I'm in the US.  We can do it here if we stay within our medical group, which usually gives us a number of options.  I just don't know how health care coverage works there exactly when it comes to second opinions or asking to change docs.  Good luck and do keep us posted!
    • kim94523
      kim94523

      Posted

      Oh, one more thought... if you ARE allowed to switch, and you are in the UK, many of the people on this forum have good Rheumy's... maybe if you give your location (just generally), other UK residents can recommend Rheumys in your area.  smile
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