Diagnosis dilemma what's in a name?

Well today I had my long awaited appointment with a professor at the University College Hospital London. Despite my ANA being raised and other blood tests reading above normal that are associated with lupus, the pain in my joints, rashes on neck, sun sensitivity, butterfly rash on face that the GP didn't see because by the time I got an appointment a week later it had died down to look like eczema as opposed to looking like and feeling like a burn in the shape of a butterfly across my face and a little on my eye lids. Although he did see the rash on my chest which prompted the blood tests but he didn't describe it in my notes. Headaches, night sweats, repeated chest infections etc his diagnosis - not Lupus.

He was more interested in my joint pains, and asked me to do some exercises like putting palms together then backs of hands together, one hand behind my head and the other behind my back to see if they met - which they did and I could hold each hand. Lots of bending of limbs... he said I have hypermobile joints. Yes I could bend my thumb to my forearm when I was younger and still can almost do the same now I am 62 with an inch gap. So too my two sons. So he said it looks like it could be CTD. But thinks the chest infections and rashes might be sarcoidosis. Great.

I don't want Lupus neither do I wasn't sarcoidosis, but that diagnosis was made years ago by one of the leading specialists in sarcoidosis professor Steven Spiro. So too was a diagnosis of fibromyalgia made years ago too.

Today's appointment made me realise that any autoimmune problems can morph and if you have one you are quite likely to develop another.

I have developed a really bad pain in my shin which has been like this for several weeks and now a slightlynraised swelling along the bone of about 2.5 inches and 1.5 wide has now appeared. The sarcoidosis clinic want a biopsy done my GP wants an ultrasound and the lupus clinic were disinterested. The pain is so bad it comes in waves which wake me up at night. Like terrible toothache right in my shin bone. The sarcoidosis clinic said it could be a sarcoid lesion or something else, my GP wants to rule out a cancer.

So what's in a name really Lupus, Sarcoidosis or CTD I don't think anything much can be done for any of them except using steroids when a flare occurs. I feel disheartened that another name has cropped up for consideration. When I feel just as poorly as I did, but now I am back to square one again.

Linda

17 Replies

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  • Oh dear Linda - welcome the gang of CTD waifs and strays! Well I'm not technically a waif and stray anymore since being rediagnosed with primary Sjögren's last year. But still I feel like one - showing that having a name isn't always all it's cracked up to be.

    I went from probable RA in 2011 to probable Sarcoidosis to diagnosis of RA with secondary Raynauds, small fibre neuropathy and Sicca to primary Sjögren's last year. I know I have a very neurological and longstanding Sjögren's and I've had Hashimoto's thyroiditis for about 15 years.

    But, as I've just said to Wendy on her post of a few days ago, I am of the view that what matters is feeling that we are believed and treated correctly and respectfully. Beyond that I don't think there's quite as much in a name as I used to think before I had one!

    You seem to be believed and are being extensively tested. I think this is a very good starting point.

  • Thank you so much for your comment. Sad as it is you're right a name is nothing really but the symptoms are important. Saddest of all is that all the tests I am receiving are only because I have shouted loud, and asked for second opinions. if i had been a miss mouse i would be sitting licking my wounds feeling dejected as well as rejected, but to be honest whats the difference? Shouting or ignored it amounts to just the same.

    To top it all I received a letter today to say that as I did not attend my appointment at UCL they would be returning me to my GP!!? I phoned them to ask why this letter was sent as I saw the professor? They said that as he saw me and decided it was not Lupus, I was discharged on the same day as I was seen. There is no letter that covers this so the letter the system produces is the one that says I was a DNA (did not attend). The professor was dictating a letter of his diagnosis to my GP as I left the room.

    Sometimes I do believe the NHS waste so much money on unnecessary paperwork. The letter he was dictating ( as I left his room) would be sent along with him saying he did not think I had Lupus. One letter covering the appointment, his diagnosis and discharge = one typist one stamp. Instead I now have two letters and a whole lot of time wasted speaking to the appointments team as UCL who also told me that they have this problem all the time - since 2005 in fact and the management are well aware of it. It needs changing but none has done that so far.

  • Ugh that's dreadful Pepysmum! I completely agree about postage. Fortunately I've never yet been dismissed but I was left unseen on Methotrexate for 10 months, following misdiagnosis of RA - and that was remiss enough. But mostly I've been believed to have something systemic amiss and for that I'm always very thankful. Although, like you, I have always had to wave a flag to highlight wonky blood results etc - otherwise I'm sure I'd have easily slipped through the net. It really shouldn't be this way!

    I too had to fight tooth and nail for a rediagnosis - having been wrongly diagnosed with RA originally. So what's in a name? Well quite a lot actually - certainly where the NHS and getting PIP are both concerned! 😳

  • Here in northern Italy I usually walk out of the consultation with my copy of the letter written by the consultant at the time and it is on the computer for my GP to look at immediately - she can see everything from the hospital, they can't see everything she writes, she writes a letter to THEM when I am referred.

    We are encouraged to pick up our copy of every test done and file them - which has a lot of advantages when you are sent to a different hospital that isn't yet on the system. And anything that would mean a long journey to fetch is posted out to us. But it is a small region - and they KNOW it is important to finance things properly.

  • Absolutely correct, a sensible way to go about things. Maybe we should take a leaf out of your system's book and run ours more efficiently. No point bleating about lack of finance when so much inefficiency is going on.

    I too now take blood test results and letters with me. But referral letters have never been given to me as copies and the response the consultant writes to my GP always is typed up much later so I cannot be given a copy on departure from the appointment.

    Fortunately I am always sent a copy of the diagnosis or response as the case may be, and can therefore see if there are any errors as clearly there are in my case on both the letter above to Twitchytoes and the illustration I have given to Misty below.

    The worrying thing is I took these letters and blood and lung function tests results with me when I saw the consultants and they still got it wrong!

  • For goodness sake!!!!!!

  • Hi peps yum

    Interesting to read of your diagnosis difficulties. Glad you had such a thiroough consultation at UCH!. The difficulty with these illnesses is that symptoms can be similar for such different illnesses and it can be hard for us to differentiate. It's good you were taken so seriously and have prospect of further treatment and help knowing that you are hyper mobile and have sarcoidosis. Better in some ways to stick with this diagnosis that you had years ago rather than adding another illness like lupus but time will tell!. Hopefully you will be well monitored and I hope your better soon. X

  • Thank you Misty, Sarcoidosis is another one that morphs and is annoyingly hard to pin down. But as I have a positive diagnosis of this one has a tendency to blame it on all ills. Like when I had pneumonia last year everyone thought it was sarcoid. Anyway I can't see what benefit it is to me to know I am hypermobile in the limb department - apart from perhaps swimming about crab-like for amusement.

    I think it is better now for me to get this shin anomaly sorted out just in case it is a clot or a sarcoid granuloma/lesion or anything that will cause more trouble.

    Then I plan to have my camera at the ready in case my face should decide to produce some sort of spectacle worthy of a mug shot, and take the pain relief I am now prescribed.

    In addition to the reply I gave to Twitchytoes above, I also received a letter from the Brompton from the consultant I saw. Her letter is entirely wrong!!

    She asked for the results of an ultrasound scan ( on my shin) that she says I had done a week ago - But as I told her I only saw my GP the day before my appointment with her, and my GP had written off to get me an ultrasound scan done - I am still waiting for the appointment.

    She says in her letter : she is satisfied that I have not had any chest infections since my last sarcoidosis check up last year - Bur I have - three chest "infections" in total one of which lasted two months. They have cause serious breathing problems and warranted an emergency admission to hospital in June where tests were also done to determine if I had an autoimmune disease especially lupus. I was coughing blood and they said there was a blockage in the lung.

    At the meeting she even suggested that I am prescribed antibiotics to keep at home in case another chest infection occurs and I am unable to see a doctor in time. I didn't like this idea as I am not qualified to tell if it is a bacterial infection or not!!

    So the letter was totally innacurate. I phoned her secretary to point this out, and she asked me to correct the letter ( facts) by email and send it back, and the consultant will rewrite it when she returns from holiday!

    So I have now done this, updated her on the UCH and my mobile limbs and possibility of CTD suggestion by the professor at UCH. Sorted out a spurious wast of letter as above at the UCH and acted as proof reader and secretary for the consultant at the Brompton.

    I am 62 - and able to use a computer and am reasonable literate. It makes me sad to think there must be a whole host of people out there who cannot make the checks and deal with errors for what ever reason and their notes will be littered with inaccuracies. Including being labelled as not attending an important appointment when they were there.

    Makes me wonder if there should be a help group like the CAB to assist people in this.

    -----------------------------------------------------

    PS-- The professor at UCHL had a good sense of humour - On his introduction to me he stood up introduced himself to me shaking my hand, he also introduced one of his student doctors - I shook her hand smiled, and lastly he introduced another girl who I assumed was another student doctor. He introduced her by name saying she was from "palmistry on the third floor!!!" I stood stock still in my tracks - I said: " don't you mean PHARMACY on the third floor?"

    We all laughed.

    It made me wonder if they do this to see how many patients actually pay attention to the introductions as I normally don't.. and run a bet to see what the % is per day that miss the odd intro? Must be so boring saying the same thing all the time ! It also puts the patient at ease. He was a jolly good doctor in fact.

  • I'm gritting my teeth just reading this! I thought I had problems when I wasn't followed up for well over a year because someone somewhere thought I had been discharged. Only on changing my GP practice and having a GP say "we do not have the training to deal with conditions which require input from a specialist" did things get moving ( and I saw from letters how incompetent admin at my last practice had been)

    On the one hand I don't need a name for whatever auto-immune stuff I have going on, as long as I get treatment, but on the other, if I was shoved from pillar to post I would be infuriated.

    The hypermobility is interesting, isn't it? I just thought I was flexible until a physio remarked on it. Both sons and a nephew are the same.

    Do let us know if you get anywhere.

    Edited to add - yes, take selfies. I have some beauties to present because the butterfly vanishes at the hint of an appointment.

  • Oh I love your reply! Makes me feel human - thank you. It a jolly good job I am not fighting for a diagnosis of haemorrhoids taking a selfie of those might raise a few eyebrows.

  • Oh thank you for the laugh!

  • Hi peps yum

    You make some good points about the difficulties of navigating the health system. Cab is definitely there to help people fill in forms and sometimes we just need things checked for us!. There is also PALS at hospitals who can help!. I too get mad sometimes when I feel as if I'm doing other people's jobs for them and I don't get paid!. It sounded like the Brompton consultant wrote about a totally different patient to you!. It makes you wonder doesn't it?. I totally agree that it's easy for our main illness to get blame for all our ills regardless of symptoms etc. Can be laziness on part of time constrained doctors!. It sounds like you've had a tough time with sarcoidosis and really don't want anything else!. I've a friend who developed it later in life just in time for her retirement which she's never had!. It's a horrible illness!. Good idea to take pictures of any rashes to show consultants and I hope you get your shin sorted out too. These illnesses can all have similar symptoms making it hard to differentiate. It's well known that if we have one auto- immune illness then we're more likely to develop others!. I have over the years. What I've also found is the higher up the medical tree you go the more likely the consultants are nicer , more human and will listen. Some are even modest at their achievements!. It sounds like the professor you saw at UCL is one of them!. He sounds great and I hope you can stay with him!. Has anyone suggested treatment yet?.

    Keep fighting and you'll get there. Keep us posted. X

  • Hello again Misty,

    No because the professor said I don't have Lupus. So no treatment, I won't see him again.

    I wait now till I get the shin thing sorted.

    I must retain a modicum of humour otherwise I would go crackers. You're right the higher up the tree the more modest and less of an ego the professionals seem to have, - maybe they don't have to prove anything to their peers.

    Makes it all sound like a jungle environment for those not high in the canopy!

    x

  • Hi peps yum

    I completely agree with you about needing a sense of humour!. It's kept me going over the years!. Shame you won't be seeing the prof again!. He did sound nice and I agree they have nothing else to prove when reached the top!. In some ways you have enough to cope with two illnesses you don't really want lupus too!. Does that mean your Brompton consultant is your regular one for sarcoidosis?. Are you on treatment for it?. X

  • Yep the Brompton consultant is for Sarcoid. I have seen a number of different consultants for this but I am under her name - it was the first time I have met her - shame she got it all wrong. never mind I have corrected the errors in her letter and done a decent job as a secretary and proof reader. I will not be putting in a charge to the NHS for my services! No treatment for it as each time i have had a flare by the time i get an appointment It is over the peak and so no point in taking the steroid! x

  • Not a good start prosy mum. Hope she makes up for it!. It's very generous of you not to charge the NHS. Seems a shame we'll be losing you on this forum. Is there one for sarcoidosis?. X

  • I understand..My rash, got my Drs attention(a month ago)..did a lot of bloodwork ANA very high, sent me to a Rheumy , she did more tests...Looks like LUPUS..my Rheumy said Discoid Lupus BUT, because the rash was on my chest and upper back Dermatamyositis was brought in to the mess....More Blood work.... terrible to wish for Lupus..the alternative or overlap freaks me out...I am new at this...at such an old age 62...it does explain a lot of what I have been feeling for years and years though............

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