Private rheumatologist

Has anyone paid private to be seen by a rheumatologist? I have been in touch with a private hospital purely because when I saw the rheumatologist last time I was given a leaflet on fibromyalgia and he discharged me as my mri on my back was fine and vit d was back tnormal.....

I just want a doctor to understand me?

What do you think? Oh and I can be seen in a few days. Took me 5 months on nhs!

x x

31 Replies

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  • My NHS rheumatology was OK.

    I have seen several private doctors one was terrible, one was great and the rest were middlingly.

  • It's so difficult isn't it, the thing is what are you hoping from a private rheumatologist , are you having treatment for fybro which isn't working? Or are you hoping for a different diagnosis, I've seen a private heart specialist before which cost a lot of money who came t the same diagnosis and just changed my medication which my Dr could have done, I don't know it's all a gamble.

  • I don't no what I want? that sounds silly doesn't it? I feel if I pay maybe I'll get more out of it? Maybe a second opinion is what I want? More confirmation?

    my gp has tried alot of different med's so it's not that. X

  • I know just what you mean, I don't know what I want either - I just want to feel better, and nobody seems to be able to help. I think that GP's are just 'sorting offices' these days, so ask for a second opinion, but I think you will find that most specialists also work for the NHS, so don't go paying out unless you have lots of spare cash to splash about.

  • If you just want a private Dr that will be more understanding so that you can talk to him, then find a Dr that has a special interest in treating fibro.

    It doesn't have to be a Rheumatologist and you should find one listed through one of the fibro organisations, it may or may not be any better than the leaflet.

  • hi there the worst thing is not being told anything and then being discharge it though they don't care i'm not sure about this i could do some research for you if that will help take care kind regards bigalan x

  • I have seen a private consultant and he was really good. I want to genuinely wish you all the best of luck if you decide to go ahead and see a private Rheumatologist.

    All my hopes and dreams for you

    Ken

  • Hi Keeleybee

    I know it's a bit geeky, but would you be able to tell me a bit more about the fibro leaflet the rheumatologist gave you?! What was the title - who published it - was it one the hospital had put together, or was it one a charity had done?

    I'm doing some research on communications in Fibro (IBS and CFS/ME), and I'm really interested that the rheumatologist gave you a leaflet - I think that's quite rare, and but it's disappointing that it didn't really help you.

    There are some lovely posts for you on the way forward from people with Fibromyalgia, my little bit of advice is that my research seems to suggest that finding a GP that 'gets it' is really important in helping you both work together to find a way forward.

    Good luck!

    joanne.smithson@northumbria.ac.uk

  • Hi Joanne

    Sorry I don't have it anymore, it was over a year ago now.

    Sorry xxxx

  • Joanne,

    I still have my leaflet/brochure if you want it.

    PM me with an address and I'll send it to you,

    Maggie x

  • I paid (on my credit card) to see a private rheumatologist after an US scan showed synovitis so I thought it might actually be rheumatoid arthritis or another inflammatory arthritis.

    My original rheumatologist was like yours - 5 mins and a leaflet (about support groups) with no real diagnostic questions or tests.

    The private rheumatologist was a complete waste. I was having a good day so pain and swelling was minimal. He moved my joints and said they were fine and wrote me a prescription for naproxen (which I asked my gp for as I would have had to pay for otherwise). It was 10 minutes.

    It was my own fault as I should have asked more questions and asked for a proper discussion. But in my view, not worth it. I know others have had better experiences though.

  • When I was diagnosed I was just sent away with a small booklet and prescribed pregabalin and tramadol. Even my examination was a few pokes while sitting in the chair.

  • That's it isn't it. Gave me something to read, asked if I had stress in my life ect ect anything traumatic. After if I felt like I was getting a cold which i said no hahahaha but now I no he means flu like symptoms! which of course is how we describe it oh and being run over a few times. x

  • Hi, I saw a private rheumatologist. He was recommended by my neurologist as an expert in FM. He diagnosed the severe fibromyalgia, but that's about it. I went back several times. He examined me, told me I was in a lot of pain (like I didn't know) and presented me with a bill of £175 each time. I'm sure like many others with this condition, I had questions like: what is the prognosis? will I get better? will my condition deteriorate? What can I do to help myself? He couldn't answer any of these questions. His only suggestion was to get my 'depression' under control. All these things a good GP could have done, perhaps apart from the diagnosis. Sorry I can't be more positive, but if you're self-funding, I would think twice before going privately.

  • Yes would be my own money and hubby bless him said he will start to save for it. Thats all the question's I want to ask. I just want the attention I should get if that makes sense. I think I want another doctor to go yes Keeley its Fibro bla bla bla.

    And in all honesty when I saw him a year ago I wasn't as bad as I am now and if anything I have more pain in more area's and the fatigue is horrible.

    A year ago I thought something is wrong aka my whole body has nerve damage or Iv got some sort of cancer. (dramatic i no) I demanded a whole body MRI lol and everything to be tested that could be. So yes they did all my bloods, gave me full MOT, mri on my back as i have water bottle burns all over my body from trying to ease my pain. MRI came back fine, nothing wrong.... So came down to Fibro.. given a leaflet and on your way! ;-(

    hope your ok xxx

  • I had my second Rheummie appt about my fibro a couple of weeks ago.

    Basically, after receiving the little brochure on the first appt, I researched on this and other sites. I presented the 'results of my research' on the second appt and the (junior) Rheummie acknowledged everything I said, agreed to write to my GP with a B12, D3 and iron/ferritin blood testing and supplement protocol, and commiserated with me about my poorly treated Hashimoto 's thyroidism.

    I was sent on my way with the offer to see me again if I develop any further autoimmune conditions.

    Maggie

  • Hi there. I am sorry to hear that you are having a tough time. It seems once we receive out diagnosis we are left to figure out how to cope. It helps me you have an understanding gp. I have found support groups invaluable, and my local pain clinic has also been helpful. Good luck x

  • I would like to suggest also that either you could see if there is a GP who will work more with you on trying meds and different combinations and doses of meds. This will take a lot of time. So far I have not had this, but I have read that this is what is needed for us and that there are doctors providing this kind of help.

    Also, you may get better results by asking for a referral to a pain clinic. They generally can give you some options.

    At the moment, until more research funding is available from government (they are very bad at funding research into Fibromyalgia and ME) and more private donations, for the excellent researchers who are working tirelessly to help us find good treatments, understand what is going on in our bodies, look for biological markers that can help with diagnosis and determining what treatments will work for us, we just don't have really good care and treatments available to all.

    Some doctors are evidently really clued in and on top of the current best treatments known and available, they keep up with research and they give it enough thought and time to help each patient as an individual. It seems very difficult to find such a doctor, but I have seen enough people saying they have one to know that there are some out there.

    I hope you find the help and advice you need to feel better. We are always here to listen and share what we know and have experienced.

  • Thanks Budgiefriend,

    Yeah your right.. I have had different medication's start of this year and nothing seemed to help as much as amitripline so I tend to stick to that and my GP saying i need to have cocodamol all day every day before they will try anything stronger.. I don't like takes pain medication all day though.

    Yeah I would just like a doctor to see me regular and listen more than through tablets at me and say try this. I don't no.... I think it just drags you down.

    Would be great if they found a cure wouldn't it x

  • I know how you feel about taking medication all day. However, it's easy with this illness to get so we block out our awareness of pain and don't catch it starting to be a problem.

    I don't stop what I am doing until I feel I have no options. I don't take co-codemol (I have to do that on top of my already high doses of pregabalin) until the pain is extreme. It''s hard to find a balance between taking care of ourselves and being able to still have some bit of a life. I hate stopping what I am doing, but I know what happens when I don't and I am trying to do better with that.

    I think having a regular dose would help keep things at a manageable level, so probably best to try doing what your doctor says.

    But do report any side effects or concerns that arise with it.

    Also your pharmacist can often provide very useful information. For example, whether it is best to take it with or before food, what medications or foods may make the dose less helpful if you take them together, and similar things. I have never phoned a pharmacist and got anything but a kind and thoughtful reply with lots of information and answers to my questions. They seem happy to do this and don't want you to have bad results with your meds.

  • I think the same I should only take the tablets ie cocodamol when I am in a lot of pain, but as you say the doc's want me to manage it more. someone just asked me why I look so spaced out! having a bad day today so I do like im stoned hahahaha and pale. Oh the joys.

    I don't like stopping doing things either.. always been my nature to do alot of work and socalise and run around after my little one ect but now I do pace myself. I have become a tv buff ha ha .

    do you get on with pregabalin? thats Lyrica isn't it? I tried that and nobody could understand me x

  • yes, it helps me sleep and takes the edge off the pain for me. The really bad thing about it for me is that it has caused a lot of weight gain and I am miserable about that.

    I have not been offered any alternatives that help. I am still in a lot of pain most days and some days the pain gets horrible. So I am going to be requesting a referral to the pain clinic again, as I have not been seen by them for the past 4 years. It is time to have a review and see what other meds or combinations they might suggest.

    According to the surveys and info the ME Association gathered in a very large research study, Pregabalin is only effective for a smallish fraction of people and for those it gives only a small to moderate amount of relief. Many people suffer from side effects and have to stop it.

    I have tolerated it well, except for the weight gain. I was spacey and had major cognitive problems before I went on it, so I don't think it has made those worse. The ability to sleep once I fall asleep, is the best benefit it's given me.

    I still have trouble falling asleep if the pain is bad, but once I do, I get at least 5 hours which is far better than the horrible mess I was in when I started taking it. I'm gradually trying to get my sleeping hours and times more stable.

    Other factors are helping that too. I now have one regular carer instead of several and she comes at set times, where before, it was all over the place with different people at different times. That made things hard for me to manage any kind of routine.

    Since she started, my sleep schedule has become much better and especially I am gradually working toward more hours each night. I'm up to an average of 8 hrs per 24 hr period. I find that if I have had a bad night, I really need a nap early in the afternoon. Without it, the pain gets bad the following day. I'm hoping to increase that to 9 hrs per day, because that is how much I think it takes to make sure I get deeper sleep and have time to completely relax as well as time to heal, which we really need.

  • Problem is they don't know what causes it so how can they cure it 😞

  • Just about the pain meds. I know when I had a depp vein thrombosis and my hips and legs were zinging they gave me strong painkillers and I did not really want to take them so I only had perhaps one or two doses a day. When I went for checkups the specialist told me that I must take the full dose until I got completely out of pain and then take it for at least three to four days like that before even attempting to cut down. He said otherwise you never get on top of it and when I had fibro my GP said exactly the same. I know sometimes when I have been out I have missed a dose and boy have I paid for it the rest of the day and for some days afterwards.

    If it will help put your mind at rest Keeleybee it might be worth paying for that second opinion as if it confirms the first then you will be able to stop looking for other answers to your symptoms. Sometimes we just need that confirmation we are not going mad and imagining things and that the first diagnosis is right it is that nagging feeling in the back of the mind that it could be something else that sometimes lets us not rest..

    Let us know what you decide.x

  • Thanks rosewine :-)

    I do think deep down it is fibro it's just having that other confirmation... And even spending hundreds of pounds will give me the reassurance I need? X x

  • My visit to the NHS Rhumetologist was a waste of time. He poked me a few times got me to go off walk some stairs and come back and took my BP without asking about the BP meds I'm on. He did book me in for a sleep Aponea test which was normal. Then gave me the leaflet and on my way. Twenty mins!

    What I wanted was a diagnosis and only through a letter from me, one from my GP and one from my Diabetic Consultant did I get a one paragraph letter confirming I had Fibro.

    My wife works at the same hospital and it turns out this particular Rhumetologist doesn't believe in Fibro!

    I rely on my GP for all my meds he is a superb Dr. Also I am going to a pain clinic for three bulging discs in my neck. Normally everything is put down to fibro!

    As nearly all Rhumetologists work both for the NHS and do private consultation I would personally be reluctant to part with my cash! Another option could be to seek a second opinion from a different Rhumetologist. Or certain hospitals have not just pain clinics but specialist pain departments who list Fibro as one of their areas. I believe Kingston in London has it but there will be others with a bit of Webb detective work. What really surprised me was that you could be referred by GP or self referral.

    Is it a diagnosis your looking for, meds or help coping with pain? There are lots of groups out there. Plus the MS society has opened its doors to Fibro sufferers as well, which is a route I am going to greatfully explore.

    Personally I'm not sure we should be seeing neurologists rather than Rhumetologists as this is a central nervous system based illness, but that is just my view.

    Best of luck

    Patrick

  • More of a confirmation and a yes it's fibro. I think the meds I'm on suit me.

    I'm probably in denial. Iv been misdiagnosised alot over the past 4 year's and maybe my trust is lost? I had a very rare type of tumor and apparently in medical paper's but I have 5 doctor's tell me it was gangalian cysts - untill they cut my arm/wrist open to a ugly green cauliflower tumor! Growing for 7 years.

    x. X

  • Maybe a letter to the Rhumetologist asking them to concour in the absence of any other diagnosis the most likely course of treatment is for fibromygelia.

    I believe a GP can actually diagnose fibromygelia but they prefer to pass the descion to the Rhumetologist. Consultants don't like letters and err on the side of caution when putting things on paper. I sometimes think mine gave me the diagnosis simply to make me go away.

    With no specific medical procedures or flow chat for diagnosis we are left to post code lottery and the individual personality/opinions of each consultant.

    Perhaps a letter or follow up appointment will work. It's not fair leaving you in limbo. But I'm afraid I think it happens a lot.

    Best of luck

    Patrick x

  • Hi, When I saw my rheumatologist he said the same to me fibromyalgia and discharged me. He said go your drs, if any problems tell them to come back to me. Where does that leave you really. I did go my drs she didn't say a lot about my fibromyalgia ,she just said how do you know you have fibromyalgia diagnosed yourself,no rheumatologist diagnosed it.

  • Terrible isn't it! Fibro is cruel and so random it's like why on either is my arm or back or toe hurting??? X

  • I take regular painkillers too, otherwise I'd never get through the day, I take two when wake up two middle of the afternoon and two to go to bed to help me sleep , I know if I miss a dose such as the afternoon one if I'm out shopping for instance. I feel the pain intensifying until I can't stick it. I was told to do this by my Dr. I haven't had much luck with rheumatologists since the first one who I saw privately who diagnosed me with RA many years ago, since then it's just get on with it or see your Dr if any problems 👎

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