What type of consultant is best to see for a diagnosis?

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I am at the early stages of getting a diagnosis for ME/CFS and was referred by my GP to see a phsyician. I have private health care with Bupa and called them to speed things up. Now I have hit a problem as no one knows who is best for me to see. Bupa have said ask the GP and they have said to ask Bupa??!! Bupa will fund me to the point of diagnosis and I am keen after 3 years of feeling awful to be seen by the right person. If anyone has any input I would be really grateful xxx if it helps I am in Suffolkx

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14 Replies

  • Posted

    I did all mine thru BUPA. Your GP has to refer you and is simply being lazy by saying asking BUPA. 

    You  need to findout who the lead is in your area the me association may be able to help. 

    My GP did all the usual tests first and then referred me to the specialist one of the CNCC leads. A long chat and he confirmed my diagnosis in one visit

    if your GP isn't being helpful contact the practice manager and ask why the GP doesn't know who the person is. If you complain it will make LOTS of paperwork for the GP which they don't want for something that is a requirement of their job. Alternatively make an appointment with the senior partner at the practise and say you have come to see them because Dr Xb

     doesn't know who to refer you to, they will not be impressed either. 

    Best set of luck 


  • Posted

    I think an infectious disease doctor is the appropriate specialist. I've seen a rheumatologist in the past, but have found that his focus seems to be more narrow, on pain, whereas my infectious disease doctor has a broader understanding of ME/CFS. He is even doing research, which helps inform his treatment.
  • Posted

    Hi dlp12;  I'm in Australia,  but from what I know, I feel a Physician would be your best 1st point of call....to "rule out" ALL  other conditions ....things like MS, Thyroidites(hashimotos)...etc....he/she can then refer you to a Rhuematologist, if they can't find a Definitive Diagnosis....in Australia, a Specialist referring to another Specialist, their referral is only valid for 3 months, and if you then need to keep going to the Rhuematologist, your GP refers again.....if it is only ME  and not Fibro with ME, then you will be lucky and should get better after a few years, with the right diet/exercise/rest/supplements.....I am keeping my fingers crossed for you......if they feel it;s more, then let us know, and we'll all give you our experiences/advice on what we've all tried.....looking forward to hearing from you soon..........
  • Posted

    When I first became ill, 30 years ago, I was sent to a psychiatrist first (!) then neurologist, and infectious diseases specialist. All judged that I was physically ill, but couldn't say what with! I wonder if much has changed in those 30 years?
  • Posted

    In the US, a neurologist is who you need to see to get a diagnosis.  In other countries, I couldn't guess.
    • Posted

      My experience is different from yours, and I live in the U.S. I've never seen a neurologist for this illness. The two types of specialists I've seen are an infectious disease doctor and a rheumatologist. I happened to see a neurologist for another medical issue, and he knew nothing about ME/CFS.
  • Posted

    Thank you for all the feedback, I don't knew about everyone else but becoming aware of ME/CFS has been a huge relief as it ticks all the boxes of my symptoms. I finally feel that I can give up the fight of trying to struggle to be normal and am allowed to be ill. Now I'm desperate to get a diagnosis and put an end to being made to feel like a hypochondriac or that I'm going crazy. I watched the video on the ME association and was reduced to tears at how much I related to the people in it especially the pictures of this is how I look to you & then how I feel .... It is so hard to live with an invisible illness! 

    Coming in this forum and reading about others who feel the same makes me feel a lot better so thanks xxxx

  • Posted

    Hi all just wanted to update that I have discovered it was an endocrinologist that I have been referred to and my appointment is tomorrow. Although I feel happy to potentially getting closer to diagnosis I'm also frightened as hit so many brick walls before now. 

    Has anyone else seen an endocrinologist and do you have anything that may help at this point? Thanks in advance xx

    • Posted

      Frankly, I don't understand why you've been referred to an endocrinologist for ME/CFS. Yes, such a doctor is good for thyroid problems, which may be involved in your illness. But generally, an infectious disease specialist or even a rheumatologist would seem to be more appropriate. But maybe you have other issues that make this doctor the right one to see. Good luck with your appointment.
    • Posted

      Morning Dip;  I think it's a Very good start to see an Endocrinologist.....from All the research, and recent knowledge gained, that ME/CFS is/could be related to a previous virus, that is affecting our systems (research re the Hypothalmus/Pituatary/Thyroid), and how  these organs Regulate the rest of our body and it's functions....even down to our Reproductive Organs, and All of the associated hormones that these organs produce.   By seeing an Endocrinologist, he will test your organs/hormones etc and maybe a quicker recovery than we others have beeen subjected to??    I wish you all the best, and I would be really interested in what is the outcome?        surprisedBron
  • Posted

    Homeopath. This is as much congnative as it is physical. Any half-decent homeopath will know 10 times as much on this subject as your GP.

    You've overused your adrenal gland and your CNS has stopped talking to it to prevent further damage and give it time to recover.

    Correct nutrition, extra nutrients, a complete submission to the need to recover (ie cancel ALL non-essential activities), and get hormone balancers... suma root is the best.

    Do all that and you can recover. I am living proof smile

    • Posted

      Hi Mark. I'm glad the homeopathic approach worked for you, and it's good to offer hope. However I have to say that it didn't work for me, and several other "sure -fire" remedies didn't work either. I felt like a failure, as if it was somehow my fault that I couldn't recover. So I'd just add the warning that ME/CFS is a diverse disease, with many possible triggers and so many possible remedies - or not, in my case.
    • Posted

      Hi Pixie, sorry I didn't mean to project the idea that you can take something, or eat well, and it will sort itself out.

      There are no 'sure-fire' remedies, that is correct. Everyone responds differently to different things but I do feel there is a straight-line approach to solving this puzzle of a condition.

      I am sure you will have tried many many things so please bear with me if you think I am going over old ground.

      The best advice I received was from a lady who had a two year episode following a car accident. She is quite a stressy person generally, and she told me that it was only after she finally accepted that she was seriously ill - cancelled ALL her activities... commited all evenings and weekends to doing nothing, and had her working hours amended to help with the tiredness - that her body finally turned the corner.

      You do have to let go of the idea of a time-scale. Because having a time-scale still creates a little stress... and whilst you continue to create stress (even in the smallest amount) you won't get over the first stage of recovery.

      Your job MUST amend your hours if you need them to. They are breaking the law if they don't. You lose pay for the hours you don't work, but this is FAR more important than money. You want your life back.

      So stage one of the straight line is that recovery. But whilst you are doing nothing you should be collecting the right nutrition over the internet (so you don't have to do anything other than sit there and press a button).

      Magnesium and Zinc in liquid form, 1000mg of Vit C, sports vitamin tablets, Vit B complexes. At one point I was taking 21 tablets twice a day. No joke it took like 10 minutes each time smile

      And suma root powder is an essential.

      I can't give you a time-frame for this to take effect. But you must give up all your short terms objectives if you want the chance for long term achievements. If you are studying you need to stop. Tell your course provider what you have. Only thing your GP is good for in this scenario is to give you the notes you need for organisations to believe you that you are ill.

      If you are going for another job, you need to stop. If you are involved in a sports team, you need to stop. They will have you back when you recover.

      Take enjoyment out of learning to cook new, super nutritious meals. Make amazing breakfast bars and eat them as soon as you wake up.. so you get energy packed food first thing to take the strain off your immune system in the mornings. Oh and cut out caffinee, you can't break down caffinee without using loads of adrenelin. I haven't had any caffinee in two years now. And I'm not going back.

      I really hope a small part of this information is useful. Pls critise anything I say. What I found difficult at the time was getting good advice,.. couldn't find any. And that's why I'm posting now. I want to pass on info that worked for me, but if it didn't for you then let me know and we can learn together.

    • Posted

      Hi Mark

      Thanks for the informative reply, it gives me plenty to work on. My situation is complicated, and includes other possible problems so it's a bit up in the air at the moment, but I didn't want you to think I was snubbing your advice. I'm hoping things will get clearer soon. Pixie

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