update did i realy do the right thing?

whent to see knee specialist he said hows your back i said its been ok not to bad actualy

i told him about the other doctor rumi man spondulophathy enthesis dont know wether he new or not but im sure me doc sent notes on and he had no RIGHTS.

i saw this guy private.

he informed me their is nothing they can do about that and would see me in another year but i saw THE understudy as he was not on the main specalist.

but he put me down for some phisio as i asked. dont know weather i did the right or wrong thing as this morning im still having problems on that left knee and especialy the ankle on walking but im pushing through it (i just dont know when to give up ya see)

also got a note of me private rumi man a reply he said not to go on sulphazine yet as it could last up to 6 months in some people but leave it another couple of months to see if this flares up again then go on tablets.

i know he said i had considerable inflamation in me body and that this was none damaging but im constantly thinking me ankle on me bad knee is going to come out of its socket or something its not bent to look at just feels like its sagging a bit

so the only thing i have going for me now is the phisio. when i could possibly have had me knee ripped into

is a right little bleader this thing as it can give you aches all over the show me kneck after swimming the other day felt like it wanted to bend forward all the time then you get aching wrists.

i can still see the red blobs on me fingers sort of blood goes into them real fast later on at night but it dosnt hurt like it used to.

so weather i have done the RIGHT thing or not dont know?

hope you are all feeling well today

regards john

all i want for xmas is a nhs rumi man or woman or an xray on me bleeding ankle

12 Replies

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  • oh John, whatever you do to get t the bottom of your own treatment is the right thing. Patients must be able to be equal partners in their care and make your own decisions with the correct advice. the doc maybe had your nhs rheumy notes as saw about your bad back as my doc has all my medical, maternity and rheumy notes all in one file, its the size of a planet!!!!!

    think the physio is a good idea cos after my drugs have started to work my biggest problem now is being so stiff and tight round the joints and i am waiting for physio. I have entheseis in my back and i knwo how painful it is when the ligaments are inflammed, so i hope you get your xmas wish.

    If you dont get on too well with your rheumy you can ask to change you know, you dont have to see that one , you can see another if you feel uncomfortable or they arent on your wavelength. good luck and hope you have a good day

    love Axx

  • hi allanah

    thanks for the info i didnt know you had enthesis as well

    not good in the back cos its attacking ligaments and when ligament start to go the joint is not held togethr properly so bone moves

    it dosnt take a medical degree to know that does it but they dont say it to you they think you are thick to that sort of thing

    like slakening a fqan belt of in the car it soon doesnt turn over the generater it starts to schreem slipping

    the rummy notes was a private appointment i made or i would have never known what this was

    i knew it was a worse thing than the other 2 times i pulled this back and even then i didnt think i would but it was just concentrated in the knees only and a little bit in the ankles now it feels like whatever is under that knee cap is dead

    regards john

  • Yeah, preferably before xmas, right?

    I'm not quite sure what you may have done wrong but sounds like you could do with some really clever physio advice - which is how I'm thinking for myself, too - you need to know how far you can push yourself and still stay in the safe zone i.e. not do damage.

    Have you actually been sent off for a whole year with no treatment plan other than physio?? And are you still having blood tests 'cos 'considerable inflammation' does not sound good. And you want that ankle properly investigated, obviously.

    Perhaps it would be a good idea to put your concerns in writing .... I am not sure who or what to send them to, though. If you send a letter to your knee man it might get ignored as he does seem to be ignoring you. Perhaps someone on here or the NRAS helpline could advise you who to complain to or, rather, 'address your concerns' to?

    Christina

  • yep im looking top how much push without damage christina you got it in one

    i probably know more than they do about working on the knee after 20 years of doing it and beeing ok exept for a twing for a couple of days in the winter.

    but i never had me feet this cold and ankle probs along with it

    suprisingley hands arnt to bad again today which me other things would follow suit.

    i recon if i had pushed it i could have had me knee ripped into.

    but my consern was can i pull this back a bit or ripping into the knee may make it worse and set of my immune system to a reaction if you know what i mean christtina

    better the dog you know at the moment not the one you may be take a real bit out of you

    i know the other rumi said none damaging inflamation process but i have me doubt on the bone pain

  • The knee specialist probably does need to know what went on at the private rheumatologist because if it is enthesitis, then it gets treated quite differently to osteoarthritis. I've always made sure that the NHS gets all my private consultation information and its often made the nHS change their mind about things.

    I don't quite understand what is happening with your treatment though. Am I right in thinking:

    - you have a diagnosis of spondyloarthritis with enthesopathy

    - you haven't been told to take NSAIDs regularly

    - you don't have any follow up organised

    - but you do have active inflammation?

    - your knees are a big part of the problem but the knee specialist isn't doing anything.

    If the first thing is right, then NSAIDs are the first treatment that should have been tried, and you are meant to take them regularly, not just for pain, because they are one of the best things to stop inflammation.

    If you don't have any follow up organised, then you need to get your GP to push for it, unless you plan to keep on seeing the private rheumatologist. I would have thought a six month review would be fairly normal if you are newly diagnosed until things settle down.

    If you do have active inflammation then you do need to be taking something for it - if you can't take NSAIDs you should have been offered something else like MTX. If you have a lot of problems in areas other than your spine, then you probably should have had MTX discussed anyway (as it works well for peripheral stuff).

    A knee specialist would be looking at whether you needed surgery. Enthesitis isn't fixed by surgery, so not surprising they aren't going to do anything, and have referred you to physio.

    Regular exercise and proper stretching is incredibly important for spondyloarthritis and enthesitis, and the physio should teach you how to do it properly.

    I've probably not got whats going on with you quite right, so ignore anything that doesn;t fit.

  • hi earthwich

    the 5 above are right

    i paid to find out what it is

    and why i have had this thing 3 times now and got rid of it before just left me with a clunky knee that didnt hurt only some mild ache in winter.

    i never new it was that spondy enthesis

    only thing ive had is kenolouge injection private rumy wrote to update told me on reply no sulfazine tabs yet wait some injections last up to 6 months

    hands feel better just whish the knees and ankle would start feeling better and a bit warmer feet wouldnt go a miss

    hope this tells you my predicament

    please read reply above

    regards john

  • John - sorry if you've already said this but have they ruled out Osteoarthritis in your knees yet? And have you had x-rays or MRI done yet? Because if the steroid injection made a difference to your hands but not to your knee then it sounds as though you have some inflammatory thing in your hands but your knees sound like wear and tear to me. We have to be like a mix of car mechanics and detectives with all this lot going on don't we? You certainly aren't alone in finding it all completely mind boggling though! Tilda x

  • hi tilda

    yes had mri on bck and the findings where slight disk bulge to left which should be ok Had one of these in 1991 when it struck and that was out then had no probs since 1991 with it and they said should not be a problem who read the imaging.

    mri an knee which was wreking me at the time showed slight medial wear in the inside of the leg VERRY SLIGHT same as 2005 mri knee specialist didnt want to go in at that time .

    I could not belive this showing nothing on mri under me knee cap Cos the dam think locked up in a car park and i had to waddle it to get it to loosen off.

    i know what ya mean tild car mechanic its not so bad ewhen you have a pain in your knee but when things affect other things like the swelling i got on me hands that made me feel sick at the time like when you where a kid and used to throw snow ball and got frost bite in them you used to warm them near the fire and cry cos they where so cold.

    if it was just the legs which where affected and anklkes then i would go for spine if they where not finding anything.

    but this thing started after a swim in the left leg then spread to the right leg then spread to bottom of back then spread to feet which was like somthing eating them from the inside and they where all inflamed and red at the sides. then whent to cracking kneck then into hands.

    so its hard to pinpoint the problem.

    the only one who has given me a explanation which fits is that privat rumi of none damaging spondulopathy enthesis. BUT I HAVE ME DOUBT ABOUT NONE DAMAGING you dont get ankles and feet go cold and hurt for nothing So as you say tilda it bloody mind boggling AND THE LAST 2 TIMES I HAD IT NEVER MOVED TO AS MANY P[LACES AS THIS AND IM USUALLY PULLING BACK ROUND ABOUT HERE but this time its realy hard ya get up in a morning not stiff or anything make a brew and then you start to feel the old knees start then the left ear starts ringing and we worsen through the day.

    And you say to yoursel what a wonderful world LOL.

    So next tis phisio lets see what they got gos ive done everything at the pool in moderation to try to pull this back since april dont get me wrong but i have improved a bit.

    i was going to the pool and i thought i feel that unwell im going to pass out swimming that lasted for months not to bad now have a bit of energy in a morning that wains by night.

    But i must admit tilda it realy get to you when you put so much in with your body and its not giving much back.

    sorry about the long moan

    regards johnx

  • That's okay John. The part you say about feeling fine when you get out of bed is interesting because inflammatory arthritis and RA is almost defined by being worst first thing when you've been sleeping or lying still all night - takes a while, sometimes all day to loosen up enough to move properly. I really don't know what yours is but it sounds horrible in a different way to what I experience. Must stop though cos getting car sick now! X

  • yep tildat it is a wierd one used to be stiff in a morning and about 5 goes to push myself out of bed now its one go thing.

    im wondering weather its me olive oil massarge firrst thing before i gat in bed thaTS DOING ME SOME GOOD

    i do go worse throught the day at the moment so me wierd body has swapped about.

    im a lost case tildat LOL

    I MUST HAVE BEEN INVADED BY AN AILEN OR BETER STILL A POLTOGUIST.

  • hee hee minka, better stay away from you on a full moon then lol.

    One thing i got when i went to a private doc for my neck was a letter to my GP with his findings and suggestions for follow up of what he found, and they also sent me a personal copy to keep.

    Why dont you phone the private rheumy/knee guy and ask them for a copy of the findings and to send one to you GP. When they send it then contact your GP and ask him what hes gonna do about it.

    theres no good having a wax and polish when the crankshaft has gone, so tell them to stop cleaning you and fix you!!!! lol Axx

  • hi allan

    ive given up wityh the dam docs if ya body cant fix itself then its good night vena

    they are about as much use as well i dont know what.

    felt a bit better yesterday got a cold so me immune system has gone looking at that i thing.

    must go klingons of the starboard bow

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