info from doctors today up for grabs

well i whent to the doctors this morning and asked blood tests

they are ok he said

i asked if we could run a further blood test in a few months not realy happy about doing this

also he had never herd of seronegative eh people know about it on here

so asked i will pay to see another rumi at bowmont hospital and pay.

rumatology has sent me back to the knee specalist because they belive it is nerve and knee related

what a merry go round

on one good not me hand knuckles where not hurting as much yesterday.

wonder if im had a bit of a repreval could grip better

today since going swimming not as good agai ha well.

anyone think i should go see the other rumi and pay cos im not getting anywher doc says he dosnt want me going round in circles but what else can you do .

IMPUT WOULD BE APPRIETIATED

REGARDS JOHN

17 Replies

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  • Hi John. I take it with the private hospital you mention there your in the Bolton area like me.

    Are you at a doctors (medical centre) that has more than one doctor available, if so I would advise asking to see another doctor for there perspective on.your illness.

    Your doctor might not have heard off Seronegative, because unfortunately most gps don't know much if anything about ra, after all they are only gps.

    Try another doctor before you pay privately.

    Julie

  • what do you mean move to another doctors surgery with all my notes? form the family medical centre in golbourne

    the other doctor is more a wash out he would see what the specialist says

  • Hello John,

    It must be really frustrating having to wait for a diagnosis for the joint pains you are feeling. It sounds like your GP has already referred to the rheumatologist though and they would definitely have heard of seronegative RA even if your GP hasn't. Seroneg RA is famously very difficult to diagnose though so they may be checking out other causes first.

    It might be worth just hanging on until you have heard what the knee specialist has to say before getting a second opinion. If it was your rheumatologist who referred you to them they will send a report back to the rheumy department who can then look again at your case.

    In the meantime, keep a log of your symptoms from day to day; before and after exercise, which joints are hurting and how you are first thing in the morning and during the night.

    Now that you have been seen by rheumatology and they have a file on you it might be worth you approaching them direct if your symptoms worsen but be prepared for them to tell you to hang on for the report from the knee specialist. Don't forget, the knee specialist will also have knowledge of RA and will refer you back if he thinks that is the cause of your pain.

    Good luck and hang on in there.

    Judy

  • Hi there John,

    I've got a feeling you've done this before, but why not ask the doctor for a print-out of your blood results and put them in a blog? That way people can see whether anything they've been tested for has been missed out.

    I'd say go private but if all the blood tests for inflammatory arthritis seem okay then perhaps it wouldn't be worth it.

    I think they diagnose on the basis of symptoms plus blood tests, mainly, so like Judy says, might be best to wait and see what the knee specialist says as she/he might be able to explain your symptoms.

    All the best,

    Christina

  • this is what they checked everything normal

    feather they said

    B12

    CK

    CRP

    EPS

    ESR

    FBC

    LFT

    UE

    SAN ANTI NEUTROPHIL

    SRA CYTOPLASMIC ANTIBODIES RHEUMATOID FACTOR

  • Hi John, there are a host of conditions which can cause pain and disability so beware of getting stuck on a diagnosis of ra. Personally I paid privately to see a rheumatologist following a misdiagnosis but I knew I had positive rheumatoid factor, raised esr and extreme pain in my wrists, knuckes, fingers and balls of feet, all classic symptoms of ra. Why not wait until you've seen the knee specialist? Has your Dr referred you to a neuro surgeon if it's possibly a nerve dissorder? These things do take ages to diagnose so you just have to keep at the Dr for help. A relative of mine has had terrible pain in her wrists and legs for years, because of a family history we were concerned she had MS. She's only 21 and her knees just dislocate and sometimes she has no feeling at all and has to walk with a frame. Anyway it turns out she has the same condition as Izzy on coronation St called Ehlers-Danlos syndrome which is a connective tissue disorder, it took about 2yrs before she got this diagnosis. What I'm saying is I think you should wait to be seen by the specialist and try not to self diagnose because the internet can be very good leading us up the wrong path.

    Paula x

  • As I've already said John I think you should broaden your area of enquiry to include Arthritis Care Living with Arthritis forum because this may not be RA at all and you will meet many other people with different symptoms and conditions and it will help you to determine what is actually wrong with you and where you need to go for help and treatment. I agree with others I wouldn't spend money on a rheumy at this stage if your bloods are all negative - just keep going to your GP - he can't stop you and it's his job to refer you on or to do some homework about your condition. My GP and my friend who is a GP were both aware of sero negative RA though so you should push him to learn - he's being paid enough! Hopefully you will know more when your knee is addressed. Tilda x

  • hi paula

    thanks for the reply

    i thought i had ms been to leigh today walking round and knee started to lock on me

    yes i have ankle pain on the worst knee no arthritus ra showing up yet

    i have seen a nuro doctor and he didnt think i had ms stuck pins in me asked about which big toe is up down etc etc with my eyes closed.

    but its been realy painful walking round and it could just turn out that the bad walking of the worst knee IS affecting other parts of my body my wife keeps telling me its only been 5 months but i keep getting inpatient cos i think i should be pulling back to normal like i did last time which left me with only clonking knees abit that didnt hurt at all exept in the winter months for a couple of days.

    and yes you look on the internet and you think you have all sorts.

    now my grandmother had RA so thats why i was wondering weather that was it when the lumps appeared on me hands nuckles like red under skin and wrists started to ache.

    the mri said nothing wrong in the knee but when i press the knee down the kneecap moves forward.

    the knee specalist said to me somtimes the mri dosnt show the problem and then when i get in i can see their is a problem.

    i think and it feels like im about 1/4 inch shorter on me right leg but they sain thats nothing and i known everone somtimes has one leg shorter than the other.

    im verry tempted though to go see this othe rumi man just to see what he thinks about it.

    the wife thinks im getting a bit stressed out about it all and should carm down.

    but when you walk and it hurts you just got to have a moan about it haven you.

  • enything you see missed out

  • Hi John,

    the things that stand out to me are the ESR and CRP which are tests for inflammation in the body & obviously yours were okay when that test was done.

    I guess the last one means that you do not have Rheumatoid Factor though these things are quite difficult to understand, aren't they? The RF is a funny one because it is just a hint, really, towards RA, not everyone with RA has it.

    The other thing that I recognise if FBC - full blood count- so if that was okay you aren't anaemic.

    I'm no expert but I can't see anything obvious missed out.

    My inflammatory arthritis was diagnosed on the basis of my symptoms plus raised ESR & CRP which showed I had high levels of inflammation somewhere. I was anaemic, too, which often goes with inflammation. But I don't have Rheumatoid Factor.

    If I had those blood results I'd be quite comforted - it is a good thing to have no signs of inflammation and not to be anaemic. But on the other hand 5 months is a long time to be putting up with pain and inconvenience without even knowing what's wrong.

    Of course RA could still be a possibility & I can see what you mean about some of your symptoms but I hope you find out you have something else that is more easily fixed.

    Have you finished with the knee specialist now or are you being sent to see him a second time?

    All the best,

    Christina x

  • thanks for that chris it is comforting to know you know so much about it

    like i said 5 months and dont know what this is perhaps the mind can play funny tricks but like i have said my gran had it bad came on fast ra but i might not have that.

    walked round leigh yesterday and worst knee was jamming a bit sore as hell when got home so rested a bit today i thought i would not be that good at walking but its not as bad as yesterday gets worse at night realy kicks in about 8pm dont know why but it does then every thing is aching.

    think sleeping has a bit to do with it not getting enough mind you go to bed a 10pm wake up about 5.30 am then get up at 6.30pm.

    i next see the knee specialist on 10 oct now

    got somthing in me body that was bad round may time and just kept going into different places.

    asked the doc could we do further blood tests in say 3 months time.

  • Personally I think if I was in your shoes and if I could afford a consultation with a private rheumatologist I would try it. I have absolutely no idea what the cost would be but I would at least make some enquiries to see if I could afford it.

    If you dont feel you are getting anywhere with a diagnosis on the NHS and it is stressing you out you will only be making your life and symptoms worse.

    Best pf luck

    Judi

  • NB: that should have read 'best of luck' - Judi

  • I think you should keep asking for blood tests every few months and you should also tell your GP to learn more about what sero negative means - it's shocking to me that he didn't know - give him the link you've posted and some leaflets. But do try to keep an open mind at this stage because it could be so many things other than RA - obviously not of the mind because you can hardly walk on one knee so that's physical. I really hope your apt on 10th with the knee specialist brings you some answers. Good luck. Tilda x

  • hi i have inflammatry arthritis which i think is RA although when i have bad flare up swelling looks like iv been injected with red dye my bloods are normal im sick off this pain i cant cope with it all im on mthx and not working anymore im in pain most days now have had foot injected down theratre but now pain so bad again had mri scan waiting to c if they can inject it anywhere else or is there an opp so they can shave bone from around big toe joint or maybe have the foot choped off then i wouldnt feel any pain just dont know what to do anymore have rymy appointment later today hope u all having a pain free day x

  • hi shellys its no fun is it

    i know how ya feel you do somthing and ache like hell

    mri i would not trust these they could not find owt wrong in my knees on them they must be blind i can feel the dam things like had cartlidges in me knees that dont give and soak up the impact.

  • Hi, I was diagnosed 2 years ago at age 48. I had normal CRP and ESR but my diagnosis was made on symptoms and a high blood plasma viscosity. Is it worth you asking your GP to do a blood plasma viscosity test - mine was done along with a battery of 'normal' inflammatory blood tests but, as yet, I have not seen anyone else on here being diagnosed with raised BPV. Interestingly, since that dodgy result I have had a couple of raised crp/esr markers. Just a thought and, let's face it, anything is worth trying!! Until that abnormal result, my Rheumy said I had inflammatory arthritis - changed his mind after result - thank goodness!

    Virge

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