At last someone listened. My visit to the rheumatologist

Well what a difference this time around. My appointment to see the rheumatologist was exactly as I hoped it would be. He was such a lovely man and really listened to me. He gave me a thorough MOT and actually left me feeling confident that he knew what he was doing. I'm pleased to say he hasn't said I definately have ra but he also hasn't ruled it out. He said I'll now be transferred to his Nhs list so he can do further tests. He wants to do further bloodwork as I've only had ra factor and esr up to now. Depending on that he may do xrays or a scan. He also gave me his secretary's number so I can get in touch if I have any problems before my appt is due. Even though I've had no treatment I feel more positive today. After 9 months of being messed around I finally have the chance to get some answers.

21 Replies

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  • Oh Paula I'm so very pleased for you! Well done for hanging in there and persevering. So pleased that he was lovely and kind and worth the wait and better still that he will see you again as an NHS patient. It's good that he's being thorough too and not jumping gun saying "yes this is RA" because you want to be absolutely sure before the powerful drug regime begins.

    I'm feeling stressed out and rather neglected now re my rheumy so you've inspired me to hang in there and not despair also. Thanks and again well done! TTx

  • Thanks Tilda, I was glad too that he didnt just go straight in with a diagnosis. I hope you're feeling a little better now. What has your GP done to stress you? I've read that you have quite poor support because of your location but I thought you were inproving on the mtx?

  • Well I was improving and maybe still am as not suffering acute pain but just a vague ache all over the place - wasn't sure if this was RA but others here have explained it probably is. My problem is that there isnt any expertise where I live so no one to ask but this site is a godsend as always! X

  • Paula i am pleased you got some answers and a nice consultant to boot as well. Now you will get the tests you need to find out if you have ra. Isn't it a shame we have to go private in the first place. I had to,to get some answers on my knee.

    well done. xx

  • It's bloody shameful that we have to go private. The Nhs provision is a farce from my experience. I've found this whole experience doubly stressful because of the lack of medical support. I think this forum is the only thing that thas kept me from slipping into depression. The support I've had on here has been a godsend and I can't thank you all enough x I hope you're feeling a little better tonight and manage to get some sleep. x

  • glad to hear you got some answers. my first visit to the rheumatologist was a nightmare. he was rude , nasty and made me feel like i was making everything up.i came out and broke into tears in the loos. my 2nd and subsequent visits have been great though, ive been passed on to someone else on the team and he is lovely. so patient and understanding and really listens to what i have to say . i told him i was dreading going after the first experience and he said oddly enough lots of people said that. hope they get you sorted soon :-)

  • It does make a huge difference if you can have a rapport with your consultant. The rheumy I saw first time around had me in tears of frustration too. He wasn't exactly rude and nasty like yours, he just didn't listen or look at me and made me so uncomfortable I couldn't communicate with him. I think to be honest he was clearing his list for an early dart at Christmas. x

  • Hi, My Rheumatologist was a happy & enthusiastic man when he saw me on my first visit as he was convinced he could do wonders for my condition(s). 4 years on he only sees me every 6 months & we have very short discussions. I confronted him (in a suitably respectable way) by saying he was obviously angry with himself at his lack of ability to diagnose the cause of my illness & his failure to find a treatment that alleviates my suffering - I have tried most of the drugs in his cupboard & am about to undertake Hydroxychloroquine as my joints are getting more painfull by the day - he reluctantly agreed & turned away in embarrassment. Whatever happened to my childhood faith in Doctors being able to cure all ills? All my fellow sufferers unanimously agree that our medics today can't cut the mustard. I have no other option but to concur.

    The motto now is 'Self Help' - read this as 'If we can't find a relevant drug or adjust by surgery...you are on your own'

    Keep your chin up, miracles can happen

    (o o)

    v

    -

  • Waff, I really need to respond to this. I do realize and understand how frustrated you are and feeling helpless, like being in Limbo.

    But I hope I can shed some light on the situation for you and all the others under the care of NHS physicians.

    I am in the US. I was telling my Rheumy about some of the cases here, how so many have to suffer for so long before they can get a diagnosis and treated. He told me the doctors over there are every bit as competent and knowledgeable as any of the ones in the US. Atleast they start out that way when they leave the Residency program after Medical School.

    It is the NHS system that has their hands tied. They have to account for so much to the government that none of you know about, and he has to try to treat you the way he was trained to do, but with restrictions he has to follow first. He cares. They all do. It takes a very special, compassionate person to choose to specialize in Rheumatology. They already know they cannot ever cure their patients. They want to be kind and understanding, but are governed first by the NHS rules, which are mostly cost conscious.

    Might keep in mind, when you see your consultant, he may have just spent most of the day trying to push for a patient that really needs extra attention NOW, and it was denied. It must be so frustrating to him.

    I was really kidding earlier, about Sylvie's new surgeon calling her, and said he must have been imported from the US, because some of our doctors do call and check on a worrisome patient. I was kidding because it would be very unlikely that a US physician would choose to go under the NHS rather than private practice.

    But then, Sylvie's new surgeon is a private practice, isn't he?

    I get very literal when I am tired, and I am reallly tired! Take care, Loret

  • Lorretta i am back under the nhs umberella now,but i had to go private to get the diagnosis though.xxx

  • So, will that private surgeon be the one doing the surgery? Though you are back under NHS?

  • yes loretta he will. you ok xx

  • I really have to respond to this! I don't think you intended it to be but your homily about the nhs came across as patronising. And not based on anything. It is a fine but vast system. It is free for all. I could summon up more details, there have been recent reports to show that it's the most effective health system in the world. But this isn't the place for a political debate. One of our national pastimes is to run ourselves down. I think our friends from abroad sometimes misinterpret this. Genuine criticism is part of accountability. I'm away from home but when I return I'll try a positive blog again.

  • I'm sorry if I offended anybody. I thought I was being sympathetic to all those who struggle with the directives of the health system, hoping to explain to them why there is such a struggle to get health care when they desperately need it.

    I guess I must have misinterpreted that national pastime!! But, in all fairness, be aware, that is how the rest of the world sees it, from what you all describe it. I will stick to the medical issues of RA and avoid the political ones. Loret

  • Withour wishing to add fuel to heat a debate, I think you're both right. There's nothing to beat the NHS in an emergency and for investigations and so on. However, I do worry about the degree of adminstration it's getting tied up in and feel that this does mean quite a heavy burden for lots who work in it.

    For example I think it would interesting if someone looked at the differences for example in use of biologics between Scotland and England. My sneaking suspicion is that the percentage of people on them will be similar, but it's just that the english folk have to go through an administrative procedure first. Anyway, probably best not to debate further as email not the best means. Maybe one day HU will develop a webcam so we can all natter as well as write. Polly

  • Hi Loret, Thank you for your comments. I know my Rheumatologist does really care, why else would he be so angry & frustrated with himself? I didn't mean to demean his efforts & do appreciate the restrictions he works under. If he could fix me, he certainly would but it is complicated as in all cases & he works with what he has got but keeps trying - I do give him that.

    No more negative comments from me as I do consider myself fortunate compared to what so many others have to endure. Maybe we are too spoiled in our 'advanced civilisations & expect too much'? Probably.

    Take care of yourself & thanks again.

    Waff xx

  • Paula, that is wonderful news too. Great that you and Sylvie have had a positive experience today, so uplifting, isn't it?

    Just don't let that jolt of happy juice make you want to go mop the kitchen floor or shampoo the carpet...I just did that today, not even sure I had any "happy juice" better known as adrenaline :) Take care now, Loret

  • My friend we never learn do we. Like you i want to go and do things and then i pay for it later. love sylvi,xx

  • Don't talk to me about shampooing the carpet as that's exactly what I was doing the day my pain all started last June. I did my lounge and dining room with the vax, it took about 5hrs and I've never been pain free since. I hate that Vax, in fact it would be lovely to light a bonfire and watch it burn :-)

  • Hi I feel for you all, but just want to add this. I was diagnosed with RA only in January, and i had an appointment with the rhumy within 2 weeks, having been referred just before chrismtas. I was diagnosed with the symptoms and the x rays and they could see by my hands what was happening. I have seen the rhumy consultant twice now and they have been really good and positive. I have been on mtx at 15mg for 5 weeks, and I am still having troubles, last week a friend had to hold a glass so i could drink from it as i could not hold it as i was in too much pain. I think despite some issues the NHS does the best it can with difficult circumstances, I would not be alive today if it wasn't for them. I live in an area where we are about to lose two hospitals as our trust is in serious financial debt due to PFI and they have to cut a lot of money, and one hospital is where i go for treatment. I would rather have NHS than anything, in the US if you do not have your insurance paperwork you do not get treated, at least we can walk into A and E and get treated. I have family who work for the NHS and they are members of this site too, and they feel demoralised after reading some of the comments. All view points have a point, but I for one am grateful for them because without them and the quick treatment I have had recently I would have absolutely no use of my hands. Thank God for the NHS.

  • It's lovely to hear that you have had such excellent treatment jetblack. I agree that the NHS is a godsend and hope and prey that it doesn't fall apart due to the relentless cutbacks it is experiencing. Unfortunately my care has not been anywhere near as good as yours to the point that my GP advised me to pay privately in order to get a diagnosis before too much damage is done to my joints. I think it is a poor system which leaves patients at the mercy of a postcode lottery when waiting for urgent care. I was very lucky that my husband is working and has savings to pay for my private appointment. I feel more sorry for those less fortunate who cannot. I appreciate everything that NHS staff do under tremendous pressure and do not blame them at all. I will however be highlighting to my MP the awful waiting times I've experienced.

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