Horrendous second appointment at rheumy!!!

I cannot believe the terrible time my husband and I have had today...Second appointment with Prof.C at Salford. Thought I might be getting somewhere seeing him again. Totally wrong! He is the most arrogant ignorant person I have ever had to deal with. Told me all tests negative. Symptoms add up to fibromyalgia. Costs thousands people being off work. Apparently in his view my illness is, oh sorry he does not count this as an illness, symptom, diagnosis does not add up to illness! I have worked for 42 years. I have have carried on with IBS Diverticulitis, Spondylitis, degenerative disc disease and have recently been diagnosed with small nerve peripheral neuropathy. Dr C I cannot even credit him with the credentials he may have gained 30 years ago and as I see it is sitting out his retirement. He tried to convince my husband and I that my brain was telling my body I can't do things infact I didn't need to walk with a walking stick I am telling myself I cannot walk without it. I explained I started using a walking stick because I was embarrassed by the way I was walking and keep loosing my balance. My husband who is not often lost for words was absolutely flabbergasted when he said " if there was a fire in your house you would be out quicker than him" To my mind this beggars belief! This man should be retired as soon as possible. If I had not been the strong person that I am and my god in a morning when I could have so easily have given up and not got up I really feel he could have pushed me over the edge but never mind I would be one less cost on th NHS. My rash he puts down to a nervous rash, although as stressed as I have been today decided not to come on show! Pictures weren't enough for "P.C" He says he will ask for me to be referred to dermatologist. This will cost my GP. and then put a line under it He has told my husband and I to make a list of can't does and try to do an hour each day at each and build it up . I know my husband loves me and has supported me but not this flipping idiot of a consultant has planted the seed in my husbands head that it's all in my mind. My husband is now saying if it is in my mind it is still an illness and we will sort it.! I have asked him to read information on fibromyalgia because like this so called professional I don't want him to think that this is imaginary. I have worked with young people who have severe disabilities and autism if it wasn't for strong people these children and young people would still be institutionalised. My next step is to take my husband to my next GP appointment. I just hope other people don't have to go through what I have been through today. My mouth is burning and blisters on tongue... obviously my brain is telling me to have blisters...I can't work out this logic...hey ho who am I..a mere mortal asking for help . Not a so called Professor heading soon to a large pension plus his private patients. Oh maybe that's the answer. Anyway had my rant blisters in mouth ,pains in legs, purple lips, blisters on ends of fingers, nervous rash? On palms of hands ,eyelids ends of toes, a consultant who expected me to be Sjorgrens but now is telling me it's all in my mind!! Maybe as he advised I should read up on fibromyalgia or maybe he should. and now it's goodnight from him and goodnight from me. Next job tomorrow complaint to PALS x

14 Replies

  • So sorry about this awful man. I saw one like this previously. He didn't say it was all in my mind because of high ESR and a few other things in my blood and CSF. But he stated that I didn't have a connective tissue disease. I was previously diagnosed and treated for RA for five years and he felt unconvinced I'd had this ever too. He was right.

    But the difference between him and my previous rheumy and my new rheum, is that the first and third consultants both knew I had something autoimmune and rheumatic occurring, whereas this man refused to contemplate this because of negative antibodies (I was on steroids when he tested these).

    He was never rude and never told me it was all in my head - but I felt he was implying this because he was SO adamant that I didn't have a connective tissue disease. When I asked if I might possibly have Scleroderma, as the previous rheumy had wondered, he said "no you do NOT have Scleroderma -absolutely not!"

    Six months later and off steroids and my ANA came back positive with an unusual pattern suggestive of Scleroderma or Polymyositis - with raised IgG and IgA and very high ESR and raised CRP. The new rheum in new hospital then instructed a lip biopsy, which came back very positive for Sjogrens disease. This is a definitive test result.

    He thinks I've had this as my primary disease for a long time and was probably misdiagnosed with RA -an easy mistake as Sjogrens often presents in exactly the same way. The last rheumy supposedly had a special interest in Sjogrens but because of my negative autoantibodies, he didn't encourage me to have further investigations, but just ruled it out. If I'd stayed with him then I'd have been fobbed off with having once had "polyarthritis unspecified" for another year or two probably.

    It takes many people 6-7 years to get diagnosis of Sjogrens. Many are dismissed as having CFS or Fibro along the way. Same goes for RA and Lupus too, but Sjogrens is the most underdiagnosed of these diseases I believe.

    So hang in there and find yourself another rheumatologist!

  • How in the WORLD are there still people who think that fibromyalgia is 'all in your head' when it has been recognised by the National Institute of Health as being an actual condition, not a mental illness? Oh I despair...the problem here is if it's an older prof (and I'm sure it is), they have a tendency to rarely keep up with current events, instead relying upon knowledge over a decade out of date, which is where the 'mental illness' thing is coming from. There are still doctors who swear up and down that ME is purely mental, that fibromyalgia is fake, and all we need is a bit of a constitutional and an antidepressant. I'm sorry you've come across this.

    I would second the finding another rheumy. It took me ages to get a diagnosis because once the fibromyalgia diagnosis is there, it tends to stick (and it's almost impossible to shake off). It's a throwaway answer to an unanswered question and it takes perseverance to find someone who can be bothered to look further. Stay strong, stay focussed, and have a day of some self-care to let the frustration flow through you.

    I wish you strength.

  • Thanks for your support, feeling a little bad,angry and alone. Yes he was an older man and yes I felt like saying which century are you living in. Luckily I have a brilliant GP she was right about peripheral neuropathy and now I am trusting her judgement on other symptoms. She suggested some type of vascular problems . This did not get a good response from the consultant. Even on this site I see people saying " only fibromyalgia " I don't think at the moment I can fight on. Maybe after a few days I may feel differently. Thanks again for support when I desperately need it xx

  • I'm so sorry you had this experience. My first experience was similar in 2007. I requested an appointment elsewhere in the country at Bath Hospital for Rheumatic diseases af had lupus confirmed. It's still not pleasant at my local hospital in Cornwall, but better as the consultant respected Profs opinion. As for fibromyalgia......my partner has it. She has most of the symptoms you have. The pain she endures is very real. Us women are strong, but blokes like your rheumatologist can push us over the edge. Stay strong and ask for a second opinion xx

  • Hi LottieD,

    I am sorry to hear that you had such a negative experience and am glad to read that you will be lodging a complaint.

    It is definitely worth asking your GP to refer you to a different consultant. If you want to be referred to somebody who specialises in lupus, it may be best to ask for a referral to the Kellgren Centre Lupus Clinic at Manchester Royal Infirmary.

  • Thanks. That is where I had thermal threshold test. Doctor was lovely and spoke to us straight after test. Rheumy at Salford more or less said he was talking rubbish. Seeing my GP on 23rd and husband coming to because I can't imagine this day and age that a consultant could come out with such rubbish!

  • This pathetic excuse for a man of medicine needs to attend a Truth & Reconciliation Tribunal...I bet he has DISSED loads of genuine sufferers in the same way he did you...his attitude & behaviour is INEXCUSABLE...well done Lottie: your wonderful man is right there beside you in witness of this guy's attrocious pergormance...now, on you both go to get a more informed & considered & compassionate view from a rheumatologist you can actually work with.

    Am so glad you posted...every detail you've given in INVALUABLE...am sure there are many many reading this thread & feeling braver about persevering in their search for a True Detective diagnostician. This took me 40 + years...now I've found her I'm feeling less pain & more stamina + resilience than I have since my 20s...I've just come in from a walk in the woods without a cane...and this is after decades of becoming so disabled and foggy I could barely walk down our drive.

    Hope you'll give your husband a hug for me...and get him to give you one for me too

    🍀😘🍀😘🍀😘 coco

  • So glad to hear you have found someone you can work with. It means so much when you trust and respect them. Sorry it has taken so long for you to find her but things are looking brighter and hope you keep on improving. We both give you a group hug xxx

  • 🤗😍🍀

  • sorry to hear of your horrendous experience. Unfortunately there are many doctors like that on out there.

    I just wanted to add that blood test results are not always accurate as I have found out through research, from other lupus sufferers and my own experience recently. For a while now I have been told by my rhumey that my bloods are good and lupus in remission. I tell the doctor over and over again that it doesn't feel that way as I still have all the debilitating systems, however they look at bloods and say you are doing well. one rhumey I say told me that other lupus sufferers would be happy to have blood results like mine. she indirectly told me that I was either making up my symptoms or I was an attention seeking hypercondriac. in the last 4_6 weeks I have been more breathless than usual and was sent to hospital where they took xray, which showed I had inflammation around both lungs, my raynauds was flaring with severe pain in hands and have a itchy rash that has been appearing in random places on my body since early this year, The blood result came back ok and inflammation markers normal, yet it was confirmed by the rheumy I saw that I was having a lupus flare and the rash was a lupus rash. I asked him why then are my blood works ok. he said that with lupus often the bloods do not give a true picture of what is going on with the patient.

    I realised then that I must have been at the beginning of a flare from April this year when the itchy rash was appearing in different areas of my body, however when i showed the rash to the rhumey I say in April she dismissed it, didn't even consider it might be a lupus rash and that i was in the throws of a flare because my blood works was good as she said.

    I also realised that my lupus must have been still active even though my bloods was saying i was in remission. So i am not a hypercondriac!

    I have also learnt antigens in the body can still cause symptoms despite having a low ESR.

    I hope this was helpful and that you get the result you need soon.

  • Thanks yes it is and I hope you are sorted soon. The more I read on this site and the more I think we are treated like silly little women I wish good luck and better health to you all xx

  • I saw a Prof once, he wasted a year of my life telling me my condition was anxiety before I collapsed at work with multi-organ involvement. Turns out my anxiety was Lupus. PALS received a 12 page letter of complaint about said Prof (not the same as yours). I have yet to meet an acedemic who actually has any relevant knowledge or ability to treat patients as humans. I'm sure they are out there but I have yet to meet one. Thank goodness for my rheumatologist who I would be lost without.

    I hope you find the energy to make the complaint that you want to make and that you get treated with the dignity that you deserve. But please, take a breath, the last thing you need is any extra stress (which this obviously is) as it will only worsen your already terrible symptoms.

    Best wishes

  • Thanks happy tulip. I know you are right. I am also worried about having the tag of complainer to carry around with me. Will try to hold my council for now. Written it all down what both husband and I remember and we are seeing my brilliant GP next week. x

  • Sending you a hug. I encountered this same type of thing over an asthma inhaler. The insurance company wanted to give me the generic, but it bothered me. Ventolin by Glaxo works great! I can't begin to tell you how many docs and pharmacists tried to tell me they were exactly the same and that it was all in my head. In desperation I called Glaxo and a very nice chemist told me that Teva uses (forgot what it was) something different in their HFA. Bingo! All those stupid know-it-all jerks. Keep fighting and look at "Betrayal" on utube. Joan USA

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