I think that yesturday was the end of the line regarding my anti TNF appeal....but there was more news to come!

Long awaited appointment was yesterday morning to get the results of my MRI scans to find out if the pain is down to inflammation and if so start forward with my appeal for anti TNF treatment (you may remember my bloods are all fine but I'm still in chronic pain) Got home from dropping my son off at school to find a message from the hospital to say all appointments cancelled as the consultant had not told anyone he was off for the day - great! Well I sat at home and thought for a bit and thought no I'm not standing for this so I went to the hospital and spoke to one of the nurses that I know (wonderful lady) I asked if I could have a copy of the results so I could take them to my dr to be read. So off she went and when she came back she said she had had a word with one of the other Dr's and they had said no inflammation was showing but there is degeneration in the spine and hips etc, but that they thought this was normal!!!! I was so shocked I came away without a copy of the results. It could be months before I get another appointment through, so once again I'm just left to it.

Does anyone know is it normal for a 34 year old to have degeneration of the spine and hips or is this RA related and I'm being fobed off?

My day did not get much better as I had a dentist appointment ( I asked a question a few weeks ago asking if anyone had had problems with their jaw moving forward due to RA - I'd had the normal jaw pain and then that happened) well the earliest appointment I could get for the dentist was yesterday. My children and husband had their check up and then I sat down, within I'd say three minutes of looking and moving my jaw he said I think I need to get you referred to hospital to get your mouth and jaw looked at as there is obvious joint damage in the jaw .

Has anyone else been referred to hospital due to RA damage in their jaw?

So yesterday was not a good news day for me - thanks RA. But I enjoyed a nice little picnic in the back garden with my boys when we got home!

23 Replies

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  • Mel,where do i start to make sense of your day. It hasn't been easy for you has it. For a start contact your hospital ceo and tell them all about your complaints,because mel thats what they are. They should be treating you as a whole and not just bits of you. I feel that your jaw problem is ra as is your spine. Ra comes in all sort of forms. I have ra all down my right side,my left side is hardly affected.

    Just because there is no inflamation doesn't mean to there's not ra there. That sounds like a doctor who doesn't know what they are talking about.

    The good thing to come out of such a bad day was the picnic in your garden with your boys.

    Before i go do complain to hospital and ask your gp to find out what the hells going on.

    Take care sylvi.xx

  • Thanks for your reply Sylvi, I feel a bit bad as I only tend to blog when I'm moaning about something! I don't know if it's the stress of yesturday but I'm hurting so much today nad my knees are three times their normal size, on top of that I'm doing silly things like llooking for car keys for half an hour to find they are in my hand the whole time!!!!

    Od that you should mention about your RA only affecting one side as I was always told that RA will always affect both sides at ther same time and when ever I've said I've got pain in one side my consultant has always said it must be soemthing else.

    It's another beautiful day and I feel so low, I keep telling myself off for being grumpy!

    I will do as you say and contact my GP, I need to try and find out if they will have a copy of the MRI results. My mum and dad are back from a six week break tomorrow night so I'm sure when they find out whats gone on I'll be taken in hand!

    Mel x

  • Oh Mel and I thought I was being badly served by my locality? That's rubbish really isn't it.

    So I think you should see your GP asap and push for more info and more to be done about things sooner rather than later. You're a young mum and need all these people to be doing things to prevent further damage occuring to your joints.

    I'm starting to learn the hard way that if we don't push we don't get and it's a postcode lottery for many of us so as service users we need to up the ante and really be as demanding as possible. I know being demanding doesn't come easily to a lot of people, including me when it comes to my own health (as opposed to my children's) - but when I read of what some on HU get compared to others it usually fires me into some kind of action.

    For instance today I woke up feeling stiffer and sorer than I've been for a while and have remained like that throughout the gloriously sunny day. So I phoned the NRAS helpline and the person I spoke to wFs excellent - very clear headed and I came away feeling much better informed. following her advice I emailed the head physio again to ask her what she thought i should do as I have no rheumy people I can contact re dropping MTX. Got an on annual leave reply but she will get it in a day or two and I hope it makes things happen a bit faster for me anyway.

    I think your damage sounds like it needs addressing fast, as does the jaw, and I would have thought all this could be helped along quicker by your GP who may have more clout and can join the dots up for you better perhaps. TTx

  • Tilda,you do know that a change in tempreture is the same as it being cold. I found that out when i went to spain one year,it was very very hot and i couldn't walk and i was in agony,then when i got back i saw my rheumy and she said the heat has the same effect as the cold.

    sylvi.xx

  • Sylvi that's interesting because last night when i was at choir it was unbearably hot in this big hall with 150 people all singing and no windows that open. The hotter I got the more my fingers swelled and went sore and dark at the joints and i had this weird pain in my lower ribs jabbing at me and by the time we left my ankles were really throbbing and I was desperate to get out. I don't think it applies to the weather here today because it's so fresh and a slight breeze - it's only 19 which is just lovely for me but probably sounds quite cold to all of you in the tropical South!

  • Tilda it has everything to do with the speed with which the temprature change,last week it was probally about 5-6 c and this week it is in the high teens. I only learnt about it after a holiday in a hot country. Put your hands and feet in cold water and see if that helps i do it with my hands.

    xxxxx

  • The NRAS helpliine are great, I've only phoned them once but they were so supportive. I know I need to stand up for myself but (and I'm sure I'm repeating myself here) when I feel ok I can stand tall and push for whats needed but when I hurt and actually need the help I seem to become a pathetic helpless case! I hope you feel a bit better tomorrow with a good nights sleep. I will contact my GP, I'll do it tomorrow when I'm feeling a little less sorry for myself.

    Mel x

  • Hi Mel,I always ring my consultants secretary to voice my concerns and this moves things along much quicker than faffing about with my gp.

    Sometimes i have to see the rheummy nurse first and she gets me an app. with the consultant ,this has always been the quickest way for me.If you don't have the secretaries no. just ring the switchboard and they will put you through then ask her for it.

    Hope this suggestion helps

    Good luck Beth xx

  • I think perhaps you should do these things precisely when you are feeling sorry for yourself Mel - and you have every right to feel fed up anyway if you are in pain and have been told that it is due to is degeneration in the spine and hips. They should have given you that information properly with someone there you could speak to and find out what this means.

    Also the jaw thing sounds really unpleasant too so I just want to offer you a big soft hug. I know exactly what you mean about feeling dis-empowered by pain and worry - I think most of us a like that to be honest. I'm already regretting emailing the head physio because I worry she might have a pop at me during a choir rehearsal on Thursday night. Why am I so worried about this when the rheumy told me to contact her or my GP if I had concerns and her email address is an NHS one? I think it's just as you say - becauseI've been feeling a bit sore and not myself all day and am worried about going down a dose on MTX in a minute. If I was someone else I'd say "oh for goodness sake woman get a grip you're just doing what you have to do no regrets please!"!!? TTx

  • Hi Mel,

    That is terrible treatment for you as the others have said, you should complain and put it in writing and send a copy to your local representative and the local newspaper!!!

    With regard to degenerative changes, perhaps she meant that any changes were just normal for your age? As far as I know everybody has changes in thier bones from about 16? onwards. Cetrtainly you are entitled to a better explanation and i don't even think a norse should have given you the results, sounds very unethical altogether.

    I hope that you dont give up and continue to persist. Any chance you could get a private appointment with a Rheumatologist just to get a conclusive diagnosis? Very expensive I know, but given the treatment you ahve got to date..

    Hope things improve for you real soon.

    Regards, Gina.

  • Hi Gina,

    I've had a look on line ( I know I shouldn't becouse one can read all sorts and really start to worry) and it did say that some degeneration in the bones in normal from age 30-40 onwards, if it is just that then I think that they should have said nothing at all rather than leaving me in limbo worrying. The past two days my RA has been at its worst; all the worry and stress no doubt!

  • Each hospital should also have a PALS that you can use - the patient advice and liaison service. It's there for complaints, and my experience of it has been good. Look up your local one on line pals.nhs.uk/

    But like others I think this it's terrible to leave you for so long with unanswered questions - especially if there is some degeneration you need to know why, and what you can do about it!

    Take care, and hope you get a response soon. Pollyx

  • Poor you, what a day. I have RA in my jaw and it was the Dentist that noticed i couldn't open my mouth as wide and did xrays and saw the inflammation and told me there is a drainage spot just in front of your ear lobe that can "clog" sometimes that can make the pain worse. He said I have to be very careful now to not get infections in my mouth whilst on the RA treatment and to take the pain control when my jaw hurts.

    Interestingly though i have felt so much better and not so stiff with this lovely weather, strange disease.

    I agree with everyone above about your results , you need more explanation and i would call the rheumies and ask them to ring you with a fuller explanation.

    Axx

  • GP's usually have so much to do that they may not be able to take up your case immediately. It's been 5 years since I was a nurse manager in the NHS but I think that the best course of action is to contact your consultants secretary plus taking your issues to the PALS department (they are usually really helpful people and although most are based in the hospital they are not emplyed by the Trusts). If all else fails take your issues to the CEO of the hospital, that should certainly get things moving because they have to reply etc within certain time scales..

    As for it being normal for a 34 year old to have degeneration of the hips and spine it's rubbish, for an 84 year old - yes! Good luck and I hope that you are feeling a bit better. Wendy x

  • Just reurning to your first cancelled appointment, thus needs to be made up. If you speak to consultants secretary you coukd stress that it was them who canxelled and that they now owe you ! Could you get a cancellation?

    I kicked up a stink about ten years ago and saw my mp who was in tge cabinet at the time. He wrote to the chief executive and things started moving then. But those were different daysand he was in a powerful position. He wasnt just helping me as we were ttying to formulate my complaint in more general terms. Good luck i hope things look up for you soon

    X c

  • YES... there are other conditions that cause these sort of problems.... while some degeneration is normal other conditions can cause these changes too... Spondyloathropies, Ankylosing Spondylitis, Enthesitis, Fybromyalgia etc etc etc.

    It sounds like they're doing to you what they did to me when I was in my 20's (though I must say diagnosis and treatment is much better now than it was then).

    I could have filled a river with the tears I cried after the kids went to bed... I remember that time as very tearful, frustrating and stressful, especially with a young family to look after.

    I was fed up with doctors telling me my pain was caused by carrying children, shopping bags and I was depressed!!!

    After years of pain, stiffness and crying in doctors office I demanded to be sent for pelvic and spinal xrays, I was told I had arthritis in spine/hips and referred to a Rheumatologist.

    Initially diagnosed with Sero-negative Spondyloathropies, later after admitted to hospital for hip replacement at 37 (which they were unable to do due to damage to SI joints/lower spine) this diagnosis changed to Ankylosing Spondylitis with Enthesitis.

    A.S is hard to diagnose with poor awareness amongst health professionals, all the people I know with A.S it's taken them on average 5 yr to get a diagnosis, some like me as long as 15 year and sadly by that time damage to the lower spine/pelvic girdle has progressed to an unrepairable stage.

    Don't give up contact the consultants secretary and insist on an early appointment, visit your GP too, the results of the scan will be on computer and the doctor will be able to view them.

    Please don't give up pushing for proper answers, wishing you lots of luck and the strength to continue the fight.

    Beth xxx

  • Thanks Beth for your experianced words; you really have had a rubbish time of it health wise. I think that I am going to contact the hospital and ask for a copy of the results and then make a dr's appointment and ask them to go through them with me. My dr's are very good and understand the emothional side of things unlike my consultant; I'll never forget when first saw him he said to me (whilst I sat there in tears) that he was not there to give me pat on the back and tell me it would be ok or what the future might hold, his job was to deal with the facts - cheers then!

    Mel x

  • Good day to all across the waters. For Mel, I have read all the blogs here, every one of them are loaded with great encouragement, I really can't add any more. But:

    I have had 8 spine surgeries to correct degenerative arthritis, due to Psoriatic Arthritis AND RA, and also developed the AS later, after the first several lumbar laminectomies with fusions. My back is all metal- titanium- including the cervical spine There is a space of 4 vertebrae in the thhoracic spine which has not been fused, and of course, this is where all the movement of the spine is centered. So I just have to be aware of what I am doing with my arms and shoulders.

    NOW; FROM MY VANTAGE POINT; I WANT TO ENCOURAGE EVERY ONE OF YOU TO FILL OUT THAT QUESTIONAIRE1 THIS YOUR CHANCE TO TELL IT LIKE IT IS, AND HOPEFULLY MAKE A DIFFERENCE, EVENTUALLY, IN THE WAY YOU ARE TREATED AND CARED FOR. FROM WHAT I SEE FROM ALL YOUR BLOGS, THERE NEEDS TO BE SOME CORRECTIONS MADE TO HELP EVERY BODY, ESPECIALLY THE NEWLY DIAGNOSED, AND NOT-YET-DIAGNOSED, SO NOT-YET-TREATED.

    LOVE ACROSS THE WAVES, Loretxxxxxx

  • oh my goodness, I read that and think how dare I have a moan - 8 operation on your spine is incredable. Yes I agree that everyone should fill out the questionaire, I have not yet done so but will do.

    Mel x

  • Of course you have a right to moan! My point was to indulge in Preventive meds, rather than have to resort to surgeries. Good luck! Lxx

  • A replacement appointment should have been offered because of the cancellation. you need some one to explain the results to you maybe your Gp could help explain them until you get another appointment?

    Ra/ arthritis can affect the jaw. my mum just had her 2nd consultant appoint today.. she cant open her mouth too wide as it locks.

  • Hi Alison, I have had a new appointment through it's for the 14th of May! so whats that about six weeks. But I'm going to contact my GP and see if they can help. How are you and your parents?

    x

  • have p m you mel xx

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