Life spent between Doctors

Hi, I was just wondering if anyone has experienced anything similar with getting a diagnosis/ symptoms?

I have various symptoms of lupus; Malar rash on face, Raynauds Disease, various skin rashes, feeling achey and constantly tired.. however I don't have the blood positive ANA. I had my first rheumatology appointment roughly 6 months ago and came out feeling fairly positive and that things were finally starting to head somewhere. He told me that he felt I had a 'strong tendacy' to lupus and had a lowered immune system, however where I had negative blood work he said that this would eventually test positive over time. Anyway he prescribed me with Hydroxychloriquine and diagnosed me with Fibromyalgia. He told me to come back in 6 months time and in the meantime to keep a diary and log any photos/ symptoms. Within 4 months I was admitted to hospital with severe bilateral pnemonia and a CRP blood result of 200, which resulted in sepsis and respiratory failure. I had Intensive care nurses monitoring me due to the severity of it. They said that my body had reacted to pnemonia like someone in there 80's rather than a 21 year old who should be fighting it. They also picked up on granulomas I have on both my lungs. The hospital nurses mentioned things like possible sarcoidosis and vascilitis - however these have not been officially diagnosed. During my recovery I had my appointment with rhematologist again which I found a complete waste of time!! He didnt seem to have any interest, forgot that he had even prescribed me with Hydroxychloriquine and described my admition to hospital as a mild chest infection!! He doesn't seem to listen at all and honestly was in there 10 minutues as he ushered me out the door and gave me leaflet with a helpline number if any problems and to return in a years time!! So now i'm back to feeling useless with no answers. Whilst I was in hospital I had a heart rate of 126 bpm but regular which they were concerned while it was this high but said it may be down to the infection. 3 months on and my heart rate is irregular and jumping around at 110 bpm and I am experiencing a lot of palpitations and occasional sharp pains. I had my follow up appointment from being in hospital on Friday and he is concerned with my heart rate after doing an ECG and I have now been referred to a cardiologist! I am also going back in December to have a chest X-Ray to see if the granulmoas have cleared, but the pnemonia from when I last had one had improved. Just feels like this year has been spent at the hospital! I just wanted to share to see if anyone has experienced anything similar :) Thank you xxx

13 Replies

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  • Aww, wow.. big hugs to you, I can understand your pain and frustration. I am sure many of us can relate -- maybe not specifically to the symptoms, but to how mentally and emotionally draining this can be. What a slam it is that your doc didnt even recall prescribing you hydroxy. I really hope you feel some relief soon. Let us know how the cardiologist appointment goes.

    You've got this!

    Jen

  • Thank you :) its such a hard journey but comforting knowing there are others that understand and have been through all the pain and frustration too. I have just received a letter to have my 24 hour ECG tape fitted next Thursday xx

  • That sounds awful! I've not had anything as exciting as that, but still I feel like doctors are all over the place. Some will blame my tiredness on my thyroid (hypo and on thyroxine), others will say my levels are fine and none seem at all interested in making me feel better.

    I keep seeing them for so many different things and each time they treat my like a hypochondriac who can't be ill cos I'm too young. It's like they don't remember all the times they've seen me and don't even bother glancing at my notes.

    Even with my very first diagnosis I had to research it myself and ask to see a specialist to get anything done and now that i'm still not feeling better i'm going to do the same again.

    If I were you i'd see if you can visit another specialist and get a second opinion. That guy sounds terrible! There's clearly something up with you so just keep bugging your doctor until you find out what. After each negative test go back and say "It wasn't that so what do we test next?".

    Good luck with your upcoming appointments. Hope you get answers soon :)

  • Thank you for your reply :) I totally understand the feeling of 'being too young to be ill.' I always feel really intimidated going to Doctor's and feel as though they look at me as a waste of time :( xx

  • Sounds to me like you need a second opinion pronto.Getting admitted to ICU at 21 with a chest sepsis should be ringing alarm bells about your immune system. Here is where I have my "BANG HEAD HERE" Moment. Not at you but at the rheumatologist. You don't have to have a positive ANA to have Lupus. In fact you can have a positive ANA and NOT have Lupus.

    I am ANA negative but am otherwise a textbook case when it comes to symptoms . My highest ESR has been 20 and highest CRP has been 18. Other than a few dodgey ALT readings, my bloods are pathetically normal yet I have the malar rash, and a pretty stonking one at that. Hair loss, myalgia, joint pain, rashes, neurological aspects, ulcers, the list goes on. I took pictures on my phone to show my Rheumatologist and they clearly agreed that I had a malar rash.

    I did have a persistent low WBC for a while but that was it.

    Just because your ANA is negative does not mean you don't have Lupus so a second opinion should be sought. Do some research about who you would like to see and your GP should arrange this on the NHS.

    Perhaps they will agree with the first Rheumatologist but reassurance is a great thing. Who knows until you try?

    Good luck.

  • Hello thank you for your reply. I'm sorry to hear all the symptoms you are suffering :(. I first saw a really lovely Doctor who got the ball rolling with all of this and she tested me for my ANA which was negative but explained about not having to test positive and that because I had strong symptoms she referred me to my rheumy. However I really find my Rheumatologist terrible. He seems to be one that is all for the positive blood testings. I've shown him clear as anything pictures of my malar rash but he said he isnt a dermatologist therefore cant comment. I definetly am going to take your advice of getting a second opnion. Thank you

  • I'm appalled at what you've been experiencing and you most definitely need a second opinion.

    I'm the same as happytulip - a long long history of auto-immunity but not an antibody to be seen. I have a very textbook lupus profile with some 'clues' in my blood picture but even 27 years of flares have failed to generate those 'must have' antibodies.

    Good rheumatologists will see past that so please don't wait any longer, get that referral to a carefully researched Lupus expert. I've had sepsis in my early 20's - it was actually the trigger for my lupus. It's a scary thing to go through.

    Take care and keep pushing xx

  • Thank you Clareb67 :) I am definetly going to research a lupus expert and push for referral. xxx

  • You have been through the mill, change consultants or even hospitals. I have had the same problems since 2010 including Sepsis and kidney disease to which they all told me the two things aren't related. Why wouldn't they be, too much of a coincidence and the problem with many professionals is if it's not there speciality then they wave you good bye x

  • Thank you sarahsea , its all such a nightmare as you have experienced too. Im going to try and get a second opinion and hopefully go from there xx

  • Hi Lauralulu,

    I'm sorry to hear that your follow up rheumatology appointment didn't go well and you've been left with no answers. It may be worth asking your GP to refer you to a different rheumatologist for a second opinion? It may be best to ask for a referral to someone with a specialist interest in lupus. If you let me know what area you live in, I would be happy to provide you with information about any lupus specialists we know nearby.

  • Hi Paul, that would be great thank you I live in the Basingstoke area. Let me know if you have any information. Thank you

  • Hi Lauralulu,

    I don't know if there are any lupus specialists in Basingstoke I'm afraid. Your nearest specialists may be Prof. Chris Edwards at Southampton General Hospital, Dr Fiona McCrae at Queen Alexandra Hospital in Portsmouth, or one of the LUPUS UK Centres of Excellence in London - lupusuk.org.uk/centres-of-e....

    If you want to try and find a consultant who is experienced with lupus in Basingstoke, it may be worth contacting our Hampshire Lupus Group to see if they can make any recommendations. You can contact the group Chair, Tina Stemp at tina.stemp@btinternet.com

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