What's wrong with me?!

Hi All,

I'm on a bit of a quest to find out what's going on with me. I have had bloods done which showed positive ana and ena ss-b/la positive too. Saw a rheumatologist last week who was so rude and made me feel totally awful :'(. I felt like a total fraud, but I know I just don't feel right. I was wondering if anything looks familiar so that I can start understanding what might be going on here...

pcos/pain (seeing gynae tomorrow with suspected endo), ibs, bad fatigue, frequent migraines/headaches, recurrent thrush, freezing cold hands and feet (go white and mottled, feet go blue) that go numb and sting, random hot/cold fingers, shooting/throbbing pains in fingers/hands/wrists/elbows, generally cold, dry eyes, chapped lips, mouth ulcers, solid nodules in my thyroid, sweaty (attractive!) even when cold, significant hair loss, weight gain, hypermobile joints, stiffness and pain in my back, seem always unwell and it lasts ages esp coughs and colds.

I'm totally confused about what's going on, and feel like things must be connected. I'm tired of being tired and feeling grotty, and just hope the second rheumy is better and tries to help work out what's happening here. Any pointers on things to look at appreciated! X

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32 Replies

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  • What exactly did the grotty rheumy say/infer?

  • She couldn't see my bloods on the system and kept saying 'I doubt there's anything wrong with you'. She sent me for more bloods with no ANA/ENA screening, so I'm not too sure what they could show. She told me joint pain in my hands was because I'm overweight (I'm hardly morbidly obese..) but don't understand the hands thing. And I asked about fatigue and she replied 'I doubt it's clinical, it's just common sense really'.

    I left the room on the verge of tears :(!

  • That is totally unacceptable. Are you in the UK? If so - contact PALS and ask about putting in a complaint. Discuss it with the gynae if you can - not the rheumy, the symptoms.

    What you describe is consistent with some form of autoimmune disorder - and it is her job to work out which, not to dismiss you like a naughty child.

    You mention a second rheumy? Where are you?

  • Thanks for your reply, it makes me feel rather emotional that I'm not imagining it!! I'm near Manchester.. my GP referred me and secured me the appt outside of our trust to get me seen quickly. After that appt I saw my GP again and explained what had happened.. she's put through the second referral and I have a new appt at north Manchester in Feb.

    Honestly felt like because I wasn't diagnosed she couldn't give a hoot! Boo hiss.

  • Have you spoken to any of the charity helplines?

    You can contact Lupus UK

    healthunlocked.com/lupusuk/...

    and possiby VasculitisUK might be helpful too

    healthunlocked.com/vasculit...

    Both will give you more advice about the symptoms/illnesses and suggest good options where you are. At least you have another appointment - and you obviously have a pretty good GP.

    All the best - hope the next one is at least polite.

  • I haven't, but thanks so much for the links!

  • Sorry you had a bad experience

  • Hello NatalieC

    Sorry to hear you had such a bad experience. Have you seen the LupusUK leaflet on symptoms and diagnosis?

    lupusuk.org.uk/wp-content/u...

  • Thanks! I hadn't seen this before!

  • What a dreadful rheumatologist she sounds! I’m sure the ANA/ ENA will find it’s way onto the system but it’s worth getting print offs from your GP practice to take with you for times like this.

    I don’t think, even if you were morbidly obese, your hands would hurt this much unless you have taken to walking on them??!

    You mention a second rheumatologist so I’m hoping that you fare much better with them. Sadly for many of us it becomes necessary to fight our corner and not let health professionals ride roughshod over us.

    I have Sjögren’s and Hypothyroidism rather than Lupus. But was initially misdiagnosed with RA six years ago. My hands were terrible for a few years and got me diagnosed at second appointment. Now I’m told that Sjögren’s can mimic RA.

    I’m overweight but so far no rheum or other doctor has ever suggested that this is a factor in my autoimmune conditions. Hang in there and fingers crossed for you next time - there’s no excuse for any doctor to be rude and dismissive!

  • Sadly my GP had printed my bloods off for me but I forgot them! I told her what they were showing increased levels off and she started the whole 'well I doubt there's anything wrong with you' stuff. Tut. And I know.. I'm laughing about the weight and hands thing now, in hindsight! So ridiculous. I told her my dad and grandad have RA, she said 'that means nothing'. Errr...!

    Interestingly my bloods at the GP said under the ENA line 'present in patients with SLE and Sjogren's' so that makes me wonder...

    It's frustrating I have to wait until Feb but hopefully this consultant will be more understanding!

  • Yep she sounds terrible tbh! I’m seeing my rheum for the second time later this morning so I’m getting organised. She is my fourth rheumatologist - and 7th I’ve seen in total. None have been as bad as the person you describe!

    If your anti DSANA isn’t positive but your ANA and La is then you are unlikely to get a diagnosis of Lupus without very compelling evidence - but Sjögren’s and UCTD would be strong contenders.

    And how ridiculous to tell you that a family history of RA is irrelevant?! X

  • Good luck for your appt today! I honestly didn't realise people tended to see so many doctors before finding a good one..

    I'm unsure on DSANA.. I've had to do lots of googling to understand the bloods so far! Haha. Could well be sjogren's really. Such dry eyes I've had to stop wearing contacts! One dropped out at a gig last week 😂 blind as a bat!

  • Only a few years ago it was estimated that in the USA the average patient journey to diagnosis of an unusual autoimmune disorder was 10 years. The common stuff isn't so bad, if you land lucky with your rheumy it is better.

    But the number of appalling rheumies I have come across makes me worry. I'm left to ask why they decided on rheumatology - they should perhaps have been surgeons or anaesthetists whose patients tend to be asleep or groggy. Or even better, pathologists who don't have to have ANY relationship with a living person...

  • There is a specialist lupus clinic at Salford Royal is that where your new appointment is .

  • Ahh no, north Manchester rather than Salford!

  • Poor you it’s disgusting to be treated that way by a professional. I’d formally put in a complaint. You’d complain about service if you were treated like that by an assistant in a shop or in a restaurant ( well I would anyway) PALs are great at sorting things out.

    I had a consultant lie that he had sent for my files from another hospital and who told me I want in any pain. Even though I was on a morphine drip and crying. It turned out a week later to be a large kidney stone. When he visited my bed to apologise it was rather interesting.

    It’s bad enough feeling this bad without being believed.

    Makes me so cross!

    Good luck.

  • Thanks. I was thinking that once this chapter with her is put to bed and I have all the letters back, I'll log it with Pals. I've since looked on that hospitals nhs review site and rheum has awful feedback all about rudeness, not listening, etc. Surprise surprise!

  • I’d get on to PALS now. They can help sort things out immediately when things are going wrong. It’s not just about logging the complaint.

    Also that Consultant needs bringing to account or some professional develop ASAP

  • I agree - you need to register it sooner rather than later.

  • Wow..I am so sorry that you were treated that way!! Your Blood work said positive for ANA and other markers.....Plus your symptoms...But what else dose you Dr want???? You have Symptoms and positive blood work!! I hope your second rheumy will help you

  • I know.. when she said all that I honestly thought I was going crazy!!

  • Over the past Years I haven't even bothered to report how I was REALLY feeling to my Dr...it wasn't until a horrendous rash covering back, chest, arms, hands that my Dr took notice...From a biopsy of my rash..that I requested, lead to my DX of Lupus....last summer

  • Oh my.. bless you! That sounds terrible :( at least you finally got the correct diagnosis and treatment. I suppose it only highlights how these illnesses can progress

  • I really thought I was to old to get a Lupus DX......ironic, I am a recovering Hypochondriac(I do slip back into it now and then) anyhow my 2 biggest imagined or afraid of health conditions ere cancer and Lupus of all things..I had beast Cancer 12 years ago and now Lupus...I have heard it said if you are afraid of flying, Fly..if you are afraid of large crowds go in to a crowd...so I said, do I have to get illnesses to face my fears??? well I did..and strangely enough, I am way less fearful...

    Sorry, went off topic...but yes, from what I have read, sometimes it takes YEARS to get a DX

    My Best to you as you get your answers

  • Hi Natalie, so sorry you’ve had such a bad experience. It can take a lot of persistence to get the correct diagnosis and you’ll see on here a lot of us were initially dismissed but your rheumatologist seems particularly uncaring. Really hope the next one is much better and can find what is wrong.

    Google ACR criteria for lupus diagnosis and there is also the updated SLIC criteria. A positive ANA plus 3 other criteria is sufficient for diagnosis and most importantly treatment to make you better. Twitchy is right that a positive dsDNA would make a diagnosis easier but more than 30% of people with lupus will never have it and many of us have a lupus diagnosis without it.

    With a strong family history (wholly relevant - not sure how your rheumy can say it’s not?!) positive ANA and your symptoms there is definitely something going on. Mine started in a very similar way to yours with joint pain, hair loss, ulcers, migraines, fatigue, abdominal pain (lots of gynae and stomach investigations until they realised it was autoimmune inflammation) and just a general feeling that something was wrong. I still have flare ups but am so much better on the treatment.

    Don’t give up and don’t ever let anyone make you think this is in your head (and get your blood results printed out again!)

    It’s a long wait until February - have you got a good GP? Some GPs will let you have a trial of steroids to see if it’s inflammation causing your problems - just a week or so’s course. If you notice a big improvement you’ll not only feel better but that’s more evidence for when you see the rheumy. I find steroids are like magic for me - but not everyone is the same and they do have side effects (but GPs give out short courses for many different conditions).

    Good luck x

  • Thanks so much for your reply - your early symptoms are so similar, so it felt familiar reading them! I've checked my original bloods and the dsANA was fine, which I guess makes diagnosis harder but is good all the same in some respects!

    In terms of medication in the meantime.. the gynae i saw last week was really brilliant and has prescribed me a raft of painkiller and anti-inflammatories for the abdominal pain so I guess this will help inflammation going on elsewhere.

    I've got my letter through today from the rheumatologist who was mean. She's discharged me, so no surprise there..!!

  • We share a LOT of the same symptoms, and I'm pretty much in the same boat with half my stuff coming back positive, but it's not enough for a definitive diagnosis.

    The best information I've come across lately has been dysautonomia research. The neurologist I saw mentioned how, after a severe infection (I contracted Lyme), your immune system can go rogue and start attacking your autonomic nervous system. And she suspects that's what happened, but there's no cure for dysautonomia either so....it's not great.

    But....some of the protocols I've been following have really helped. Might be something to look into for yourself.

  • Sorry to hear you're in the same boat with the symptoms - I definitely empathise!! I'll have a read about the conditions you've mentioned above to see if they give me any insight into things I'm experiencing too. Thank you x

  • Hi NatalieC,

    I'm sorry to hear that you had such a negative experience with the rheumatologist. Have you considered contacting PALS at the hospital to lodge a complaint?

    You mention that you are seeing a second rheumatologist? Have you got an appointment for this already?

    Your combination of symptoms with positive autoantibody tests definitely suggests that further investigations and monitoring are needed. We couldn't say whether it is lupus causing these symptoms or not because they are not exclusive to the condition, but it should be tested for.

    If you would like more information and advice about getting a diagnosis of lupus please have a look at our blog article here - lupusuk.org.uk/getting-diag...

    If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • Hi there. I'm thinking of contacting PALS tomorrow, I've had the letter through today saying they've discharged me, so overall the experience has been pretty terrible!

    My second referral has gone through, appt is mid Feb so I've got a few weeks to wait (but a nice holiday in India during so it's not much of an issue!!).

    Quite a few things I experience seem in line with SLE symptoms, I mainly joined this board as my original blood tests showed SS-B positive in my ENA screening, with a note of SLE or Sjogren's possibility. So I thought the lovely people here could probably give me more insight!

    I shall definitely give the links a read :)

  • To wrap up the chapter I've received a letter today saying my blood tests are normal so I don't have rheumatoid arthritis.

    I mean.. that's nice. But if she'd actually done an antibodies screening would have seen there is a problem, I didn't even go there saying I had it! Spare me!

    In other news I've been colder than ever, with such dry eyes, mouth and lips that no amount of drink alleviates, I'm think Sjogren's sounds very likely...

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