Update from the doctors yesterday : Although it... - LUPUS UK

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Update from the doctors yesterday

Although it didn’t start well when the doctor was half an hour late and it wasn’t my usual doctor (this completely freaked me out as I requested my usual doctor by name and waited 3 weeks) I have FINALLY managed to get a referral to rheumatology!

Not only did he listen to me and my partner but he pulled up information from the last time I went which was 2013 to tell me I’ve had positive ANAs since then! It was 1/40 back then but now 1/360 so he thinks something is defiantly progressing. He said it could be lupus, SLE or another connective tissue disorder but these things are hard to diagnose and to keep on with the temperature readings, photos and symptom logs.

I could have cried when I left the doctors, all the backwards and forwards, different tests being run and all that waiting seems as if there’s a light at the end of the tunnel! I’ve been told I’m probably going to have to travel as far as newcastle but if it means getting a diagnosis/some answers I’ll go anywhere.

Just wanted to say thank you to everyone on here for your support as I don’t think I could have got through a lot of this without you!

Leenie x

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Awe happy to read you’ve finally been listened too.

It’s a strange feeling how we find a sense of happiness that we maybe one step closer to a diagnosis and treatment.

Sounds like you was meant to wait and see this doctor 😉

Xx

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Thank you very much it’s really odd that feeling after a good appointment, honestly I could have cried! I’ve had that doctor in the past and he recommended logging temperatures his words were the more information you bring me the better I can advise. Im guessing it worked, just gotta keep looking forward and keeping positive now!

Leenie x

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Hi Leenie. Happy to see you're moving forward. Sorry, I seem to have highjacked your post somewhat. Just let me know if I can give any info about Newcastle.

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Very pleased for you. And your doctor liked your symptom log and temperature readings! You did a good job of documenting.

Keep us posted and good luck.

K

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Thanks for the well wishes, I’m considering buying a new notebook to keep it all in and be super organised for the specialist.

Leenie x

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There’s nothing like a good doctor is there! So glad you are being taken seriously and have been referred. I’ve heard good things about Newcastle for rheumatology. 🤞🏽😊

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Hi TT. May I ask which rheumy at Newcastle gets good reviews? Thank you.

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Well I have Sjögren’s rather than Lupus so I’m thinking of this guy who is apparently one of the leads on SS in UK - it’s also the home of the Sjögren’s registry. ncl.ac.uk/icm/people/profil...

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Hi TT. Thank you for getting back to me, much appreciated. Ah, I've been enrolled in Prof Ng's research into SS and his team took my lip biopsy.

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Very lucky you in this regard!

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Hi TT. I don't think I'll be taken onto his list as my lip biopsy was negative and I'm seronegative, but thanks anyway.

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Sadly the criteria for SS say that you aren’t even seronegative if you don’t have positive lip biopsy. It’s nonsense of course as they most probably haven’t yet found the autoantibodies for us but I’m guessing you are right about this chap’s list. In this impossible era it’s all about immunology blood - where I am anyhow!🙄🤷🏼‍♀️😊

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For sure, there's so much more to learn about AI disorders. However, while in the rheumy's waiting room I read that their research had discovered several new antibodies to SS. They have not been fully validated, but it's start.

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I doubt my lot will be looking at my antibodies again for a long time even though some antibody for CREST showed up weakly last year - but the twit dr said this was likely a false positive due to the pattern of my +ANA. I reckon mine make it up as they go!! Xx

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Yep, the NHS does seem to employ too many twits and I've already seen a few of them - unfortunately. Hopefully, when screening for these 'new' antibodies is up and running it will be easily available. After all, that's why Prof Ng has a bio-bank of salivary glands and bloods and matching clinical symptoms data. It's in the future, but maybe not too far ahead.

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Dr Brigit Griffiths at the Freeman is one of the SLE guideline co-authors:

newcastle-hospitals.org.uk/... xxx

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Thank you for this lovely eekt. I'm feeling a bit lost atm, as I'm sero-negative for both Lupus and SS and the lip biopsy was negative too. I saw my lovely Chest Consultant a few days ago and he's promised to look into the possibility of testing me for Mast Cell Activation Disease. xxx

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Glad you've seen a decent doctor and I hope the nightmare of your last appt has subsided...really hoping your recent consultation will move things forward for you xxx

PS mentioned Dr G again as I noticed she has an interest in lungs as well as CTD...some experts are seronegative specialists, though I don't know which side of the fence she's on!

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Hi. It would be really good to know on which side of the bed Dr G sits. However, I get strong vibes that my Newcastle rheumy wants to see autoantibodies before diagnosing. Guess I'll find out at review next month, but I'm not very hopeful. But, my Chest Consultant is truly compassionate and thorough, in fact he was the one who started the AI ball rolling for me. I had a very bad reaction to heat/sunshine on a recent holiday abroad - wheezing and difficulty breathing with a tight-belt feeling around my chest + other symptoms - hence his willingness to test me for MCAD. He's one of the stars!

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Hooray for compassionate doctors! Maybe, just maybe, the chest consultant's letter will prompt rheumy to be more open-minded...or you could wave the SLE guideline in her face and all the tests in it...it only takes one positive immunological test, and any of these (as well as ANA and dsDNA) will do:

Anti-Sm

Antiphospholipid antibody:

any of the following: lupus anticoagulant, false-positive rapid plasma regain (RPR), medium or high titer, nticardiolipin antibody level (IgG, IgM or IgA), anti-β2 glycoprotein I (IgG, IgM or IgA)

Low complement:

low C3, low C4, low CH50

Direct Coombs’ test (in the absence of hemolytic anemia)

Really hoping you get somewhere soon, it's bad enough being in limbo, but when you have symptoms that are quite frightening, it really is the pits. Hold on to your star! xxx

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Thank you eekt. Yes, he is a star and does seem to understand me very well. I've only been seeing him for 4yrs, so not so long really to push for me as much as he does. I don't think I have any of these antibodies, but I haven't seen all the results yet. Fingers crossed...

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Really glad to see him now it makes all the difference doesn’t it when you get a good one ☺️

Leenie x

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I don’t know - I don’t have a good rheumy myself - or not one who knows much about me or Sjögren’s anyway. And my GP practice is on emergency appointments only now so I have no access to my only good GP. But yes it’s great when things click and I do know this so I’m very glad you happened on this GP!

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Aw that’s horrible, I hope that things turn around for you and manage to see the good doctor again, emergency appointments are really irritating I think coz in our doctors surgery you must get the locum docs and they don’t know your history but sometimes they’ll look a little further into things... it’s a complete lottery!

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Thanks.Yes it is a lottery. Mind you 2 weeks ago I got an out of hours GP in the community hospital who has Sjögren’s himself and shares my CTD doctors so sometimes it’s unexpectedly okay! 😊

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I agree that this group is very supportive! I hope you won't have to wait too long for your specialist appt and that more answers may be helpful.

Amongst your list of connective tissue/autoimmune disorders has Sjogrens ever been mentioned?

Glad you have been listened to. Good luck!

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Thank you, and I think this group has been an absolute godsend during the difficult times! Being able to speak to others who are going through similar or have been through what you’re battling always helps no matter what the situation.

No I haven’t had my local doctors mention Sjogrens, do you think I should mention it when I get my specialist appointment? I know some of the symptoms which define it are dry eyes and a dry mouth but I’m sure that won’t be all that’s different is it?

Leenie x

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Yes do mention it. In the meantime do a little research about it. Even rheumatologists may be a bit vague about it as with most connective tissue and autoimmune disorders there is so much overlap of symptoms it's hard to have a narrow and specific diagnosis. It will be helpful to us all to hear what happens next.

Good luck! 😊 Well done with the diary!

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Congratulations Leenie

I'm so glad that u have been listened to n understood..it definitely helps to keep a diary n pics of any symptoms!!

Onwards n upwards from now on 🤞xx

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Thank you Krazykat, so grateful they listened this time and I’m glad my partner was there to back me up on things too. Definitely onwards and upwards from now ☺️

Leenie x

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Hello,

Make sure you get copies of all letters sent to your GP.

Hence you will have a written record of all diagnoses, medications, symptoms and any changes to your medication and side effects etc.

Keep a file for all these letters plus a personal diary.

Mine is huge over the last 3/4years😢😱😰

Lupus can be devastating for patients (and relatives) with its many presentations and myriad manifestations.

Regards

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Thank you so much for the information, I’ve got access to my records online but as part of the preparation I’m going to be saving and printing out a load of information from past appointments, especially the old ANA tests done in 2013 (which nobody told me about at the time).

It appears you can never be too prepared for seeing the medical professions these days, I’ll be taking everything I can especially if I’m about to travel so far. They said I could go to newcastle which is about 3 hours drive, best to take everything isn’t it?

Thanks again for the tips!

Leenie x

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Good for you and may all your medical consultations go well.👋

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Hi Leenie0811, great to hear that you are bearing a diagnosis of the illness yiu have been struggling with.

All going well, when you see this Specialist you will be tested and given a diagnosis in a very short space of time!

I agree that you should be capturing how your body feels on a day-to-day basis. There could be viral information that could give this Specialist a clue to what your body is rebelling against as all these Auto Immune Diseases are difficult to pin point!

Good Luck.

Looking forward to hearing about your visit. Totally agree that you would travel to the ends of the earth to get the correct diagnosis and treatment to help resolve your pain and struggle. X

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