January's Blog - Lisa's Journey to Diagnosis

Hi everyone. This month's blog has been written by Lisa about her experiences in getting diagnosed with lupus. We'd like to say a big thank you to Lisa for taking the time to share her story.

My name is Lisa and I am 52yrs old. I am married with two children and one grandchild. I was predominately a healthy child in a family of four siblings, two of which were poorly. I was an athlete until 18 years old and the only hospital contact I had was visiting my siblings. I did however suffer with anaemia. I had a very complicated first pregnancy, with serious anaemia and unexplained rashes. My baby was healthy, but I was unwell. I had similar problems with my second pregnancy.

When my daughter was 18, I returned from a cockroach riddled hotel abroad, to the start of my medical journey! I had such severe pain in my ear and jaw; I honestly thought a cockroach had crawled in there. My GP gave antibiotics but said that he felt there was more to it, as by now the pain was in my temple too. I returned two weeks later in tears and desperate for some pain relief. He gave me three diazepam to take at the surgery and called for an ambulance. The paramedics noted a swelling in my neck and said to mention it. I was admitted for a week of pain relief. My week in hospital then turned into three weeks and my symptoms were multiplying. I was admitted to the neurological ward. I was by now wearing a baseball cap and sunglasses in the ward, as I couldn't tolerate the light. I was tested for MS and had a lumbar puncture along with many x-rays and scans. My family were scared as I was losing weight rapidly, and I was obviously very unwell. It seemed that every day they were waiting, hopefully, for another horrible, possible diagnosis to be dismissed. It didn't help when now and again a doctor would pop up on the ward to discuss the possibility of stress being the cause!

I had injections into the back of my head, pills and potions of all colours, but when someone suggested steroids, the pain and symptoms began to abate. They were about to discharge me with, 'cervicogenic headache and pernicious anaemia', when my husband stepped in. He refused to take me home until they scanned the now enormous bulge in my neck. I had an MRI and radioisotope scan which revealed a multinodular growth on my thyroid gland. I was visited by an endocrinologist who said it had to be removed, and soon.

I had an appointment to meet with the surgeon to discuss its removal. The surgeon seemed to be very put out that surgery had been proposed without his say so. He also told me I would have to see a psychiatrist as he thought I had Munchausen’s.

My GP suggested I would have to have this assessment, or no one would take me seriously. I paid £185 to talk to a stranger for half an hour, who decided I was of sound mind and my suffering was real. I still have his report and joke with my family that, I have it in black and white, I am not mad. I decided not to return to the surgeon, as I was actually scared of him. We pooled our money and went privately to seek help. My doctor was wonderful and he could tell that I needed urgent intervention. I of course, had to undergo more scans and tests as he wasn't privy to my NHS records, despite asking for them. I was booked in for the surgery, privately, two days later.

After the operation I was told that all was benign, but there were two huge, blood-filled sacs that could have burst at any time. This would have been fatal! My doctor also said that he wondered how I had managed to breathe and eat as these tubes were also crushed (not anxiety as I'd been told). He did say that he did not think this had anything to do with my facial pain. After a long recovery I returned to normal life, albeit briefly, as a year later my partial thyroid removal had grown back. I had to have a second operation to totally remove it.

The matter of my anaemia had still not been addressed, so my new GP sent me to haematology. I had to have an iron transfusion every other week day, for six weeks. The doctor ran his own tests and finally referred me to a rheumatologist as something was attacking my blood. He spoke of positive ANAs, but it was all mumbo jumbo to me.

My GP was not interested in referring me, so again I went private. The bloods suggested thalassemia, and at one point they said leukaemia. I was now getting joint pains. On top of all this the NHS had asked me to see a gynaecologist regarding my monthly cycle. The private rheumy had not reached his conclusion and gynaecologist was pushing me to have a hysterectomy! I told the gynaey that I was under investigation for other causes but she would not listen. I was told that I must not refuse this op as I would not be taken seriously again. The op was booked and I went to the pre check-up with a letter from my private rheumatologist stating that I may have an autoimmune condition called lupus. I had a total hysterectomy in May 2005 (needlessly in my opinion). When I returned for my six week check-up I saw the gynaecologist. She was almost screaming at me that she would never have done the op if she knew about the lupus. She said I could forget about recovering in six months. It would probably take two years because of my meds. I have to say she was right about that.

When my much wanted appointment came through for St Thomas', I was diagnosed in a flash. I was told I had many other secondary conditions including vasculitis. This was the cause of my facial pain and rashes. I was also told that the lupus had probably attacked my thyroid, and was definitely the cause of my anaemia. The relief that overcame me was indescribable. I can't say my family were put at ease though, as obviously they wanted me well.

To reflect on it all, I have to say my attitude towards doctors has changed now. I always go away and assess their opinions before accepting them. If I feel disbelieved in a consultation, I will speak out there and then. I push if I feel I need urgent medical attention (I’m perhaps too pushy). The whole experience has left me bitter with the doctors on my case. I do see lovely NHS staff now, but I feel I am patronised sometimes. I'm not angry with my diagnosis. It's the hand I have been dealt. I am bitter at the length of time it took for me to be taken seriously. My kids were entering their teens and so much time was spent worrying over me. I had to sell my business which I loved. I had to spend a whole year in a wheelchair, and most of all I had to battle the doubting Thomas’s.

‘So called friends’ would imply that maybe I was stressed because of having teenagers and a business to run. This put enormous strain on my husband as he felt at blame. Now these ‘so called’ friends want to be in my life, but I can't forget that they doubted me.

Thanks for taking time out to read the (believe it or not) short version of my journey.

We're still looking for somebody to share their experiences of getting diagnosed with lupus for next month's blog. If you'd like your story to be featured, please email me at paul@lupusuk.org.uk

14 Replies

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  • What an inspiring read! The way so called medical professional jump into somatizing ailments is all too common, I had the same with all five of my conditions, I got there in the end, but stay on top of my own reading and cross referencing, being of the same opinion as yourself. MaryF x

  • All I can say is omg this lady has been through so much and has shown such pure strength against all odds.

    keep up the fight lisa.

  • Thank you for sharing your journey Lisa. What a fight you've had. I still find it amazing that Lupus can be so different for every sufferer. May be that is why people find it hard to understand the illness? Who knows. Best wishes to you.

  • Lisa, thanks for sharing this with us.....you have really helped to highlight the battles that we really do have to 'fight' for so much..... This goes from trying to get a diagnosis, understanding health workers, explanations to family and friends, trusting our own judjment, doubting ourselves and then finally trying to stay one step ahead of lupus and managing the condition. It's not a condition in itself .....it's all the other stuff that goes with it that we have to overcome. I'm so glad that you had your children prior to having your needless hysterectomy. You are a fighter and thanks so much for sharing your very believable journey would us xx

  • Thank you Lisa for sharing your very personal journey. I do hope that many health care professionals will read it too and learn from your experiences. I empathise about friendships. I have lost some on the journey to getting a diagnosis and some now that every day this condition has a mental and physical effect on your life. Those who remain show their true qualities of friendship. Take care and you are one brave lady. Xx

  • Thank you for all your lovely replies. I'm no braver than any of you, I'm sure. There was much more exchange of words between myself and the Drs, but Paul has RIGHTLY, omitted them. Obviously it's a one-sided conversation, and you have to be careful. Thank you for taking the time to read my blog.

  • Wow, Lisa you have truly been through so so much and it says so much about you that you pushed and pushed through it all to get your diagnosis!

    This story REALLY hits home for me as I'm still being bounced around the NHS looking for an answer that the Drs all seem reluctant to find. The fact that we have to actually try and make them believe us in the first place is just ridiculous. I've lost faith in the NHS and the Drs I've seen so far. I am glad you finally got your answers and I hope anyone else going through similar problems with see your story as inspiration to keep pushing the Drs for an answer.

  • Wow this is an awful story, but unfortunately very common. I went through so many of the same reactions. I was told it was all in the mind and even last year in A&E I couldn't even stand was told to go home and see what was causing me to think I was ill. I was diagnosed with multiple things with SLE in 1991 so things aren't really changing that much. My worst comment for me was when my mom died a (friend) said I needed to pull my self together as I had worried my mom to death. I too like you could never speak to that person again. My mom was the only person who really believed me at the time I was 29. Good luck to you and a very well written article. Xx

  • I can't get that out of my mind about your mum. I would never forgive that either. Draw strength from it, it's all you can do for your mums memory. Take care. X

  • thank you for that comment. Its been a long time ago and in her memory I hope in time i did draw strength on it. Once I was diagnosed I certainly went back and told the doctor a thing or too. My mom died before I knew what was wrong. Take care xx

  • Lisa I can believe every word, because I too was told that it was all in the mind. After giving birth at 21yrs of age, I started suffering headaches and painful joints, my face was full of spots and was told it was acne, given tablets, creams, lotions and all sorts, later became anemic, suffered from blackouts which after several brain scans, still could not explain why I was blacking out, because it had left me with a memory loss for which I had to make notes of Everything in order to recall what I did 10mins ago, later dermatology noticed the pattern of the spots, read all other complaints on my file and were able to diagnose my with SLE, 5yrs, after having had my daughter. Back then(1985) Lupus wasn't really known to some GPs and had to look in their medical books for help. My parents helped raise my daughter, but they too were amongst the non believer's. Yes, I lost alot of friends too but after 27yrs, I'm still here. ;-)

  • Have to say, my mum was all to ready to beleive the Drs. Once diagnosed she did apologise saying, " I wanted to beleive that a Valium was all you needed to get better. !!!" In a strange way I understood and forgave her.

  • Well done for sharing Lisa ... I appreciate how painful it must have been just recalling it all so much respect! Found myself completely identifying with your low points ... the disbelief, professionally-induced shame and personal confusion, which we lupus battlers are often forced to endure for years, is not something I'd wish on my worst enemy. The eventual, correct diagnosis that follows can hardly make up for what we have already suffered or what awaits us down the line. Big hugs x

  • THANK YOU for writing this all down, I completely understand were you are coming from with all the wrong diagnoses the "all the mind" references and so called friends or in my case in-laws! Along with the classic phrase that makes you grind your teeth to dust "But you look so well", drives me mad. xxx

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