struggling to get diagnosis

[Hb1375]

For the last 12-13 years my physical health has been declining. First started around 15/16 years old, I started having heart palpitations, frequent infections, lethargy and fainting episodes. Since then, especially the last 3 years and especially the last month, my physical health has taken a major turn for the worse. I’m in physical pain all day with joints, muscles, chest and head, my heart and chest are constantly struggling and I faint often too, I have mild raynauds symtoms. I had major loss of my hair/eyelash/eyebrows about 2 years ago. I suffered a miscarriage 8 years ago. I’ve had more respiratory/sinus/urine/ENT infections in the last 3 years than I can remember. I’ve been given so many antibiotics the last few years I’ve lost count. I get frequent mouth/lip sores/ulcers. I don’t get the face rash, but I do get rashes appear on the same places on my body, especially after sun exposure. I’m very sensitive to light and spend most of my time at home in darkened rooms without lights on due to the headaches lights cause me now. I’ve also noticed I’ve become very unwell requiring hospital visits, not long after I’ve had the antibiotics prescribed that they advise people with lupus to avoid. I’ve noticed diagnosed with occipital neuralgia but consultants haven’t bothered to look into why, I’m waiting to be seen by cardiology, respiratory and rheumatology consultants, all of whom have seen me over the last 13 years and have changed diagnosis many times from age related arrhythmia, fibromyalgia, stress, anxiety, eczema, low b12 etc.

I’m getting so weak and so tired of being ignored. Ive now had to demand further investigations from my doctor and push for referrals due to now struggling to go to work each day, I’m now at risk of losing my job.

Researching Lupus, I’m almost 100% sure that’s what is wrong with me, but I understand lupus is widely unrecognised and often misdiagnosed.

I’ve requested antibody blood tests and referrals back to rheumatology; as well as cardiology and respiratory.

Has anyone got any further advice they can offer that I can discuss with my doctor to help with a diagnosis/treatment?

Sorry for the long post. Just hoping someone can advise and shed some light for me

thank you in advance

[smeackles]

Goodness - what an awful long battle you’re on, I’m so sorry. I hear from this amazing forum so often people doing battle to get diagnosis and it taking so very long. I pray that you get the tests and referrals and see the right consultants who listen and act on the results. For my daughters case she was diagnosised much quicker - but it was a locum gp that flagged up the possibility of lupus (facial rash for months was classed as rosacea and impetigo with no questions on other symptoms like joint pain or fatigue, or light sensitivity). The locum got her into a hospital that night to be assessed. Sometimes it’s the right person ready to fight your corner that can be key.

Good luck and hoping for the best outcome - a diagnosis - for you x

[OldTed60]

Hi. Firstly I'm sorry it's taking so long to be taken seriously - although you mention having already seen rheumatologists but been dismissed with Fibromyalgia - a common misdiagnosis I've gathered here. It's good that you've requested immunology testing - although I'm assuming this has already been done at some stage? My only advice would be to keep an open mind about which autoimmune disease this might be, given that your symptoms seem fairly generalised other than light sensitivity and antibiotic intolerance - both of which I have too but I don't have Lupus. Rather I have Systemic Sclerosis/ Scleroderma and associated Sjogren's as well as Hypothyroidism. It took 12 years to get definitively diagnosed and treated although I must add that I was always diagnosed with an autoimmune disease - it was just the specific one that was queried. I kept asking doctors about Lupus because of my dysautonomia and migraines and because it's more common and well recognised than Scleroderma. However it turned out to be a red herring and once they'd excluded Lupus they then didn't even look for antibodies for rarer autoimmune diseases such as Dermatomyositis and Scleroderma until more recently.

[Hb1375 in reply to OldTed60]

Thank you for your response. As far as I am aware, immunology blood tests have never been done. I requested my full clinical history and cannot see a record of these anywhere over the last 10 + years so I have requested these now. I’m sorry to hear you had such a long battle to get diagnosed also but hope you are getting the help you now need. Definitely will keep an open mind regarding diagnosis/which condition I may have. Lupus seems to be the most relatable for what I suffer daily at the moment but hoping bloods and further investigations/referrals will shed some light for me 🤞🏻

[OldTed60 in reply to Hb1375]

You’re most welcome and yes please get a full battery of immunology tests done - really bad that they didn’t run these when you were seen by rheumatology and GP - particularly as I see you have mild Raynaud's - which can be a precursor to autoimmune diseases, most seriously to systemic sclerosis, but hopefully not. I mostly post on the Scleroderma & Raynauds group as this is where I fit now. But things can and do change and there are also many overlap autoimmune diseases and hereditary disorders, including Vasculitis and hypermobile spectrum disorders - also often hard to diagnose correctly I’ve found. From experience, if you mention RA or Lupus to a GP or general rheumatologist then they may only test you for this because this testing is costly and, as you’ve already learnt, medical professionals can be as guilty of confirmation bias as anyone! Eg I was misdiagnosed with RA for five years without any bloodwork other than Rheumatoid Factor and full blood count being tested. But treatments are much of a muchness for all rheumatic autoimmune diseases so at least, unlike you, I got to try most of them at the time.

[Ffshelp]

Hi

I recognise so many of your symptoms but I’m struggling to understand which are related to my medication ( which May have caused the lupus) and what are lupus. Rashes etc fatigue, dreadful joint aches etc. also non curable cancer and radiation.

once the dermatology team met together- only one of the team recognised this as lupus -2 simple blood tests diagnosed lupus. It really shouldn’t be as hard as you are finding it. Forensic photos taken clearly alarmed health professionals and tge diagnosis was the easy bit. As you say - not much seems to be known about it once diagnosed but it’s sort of reassuring to have it.

I hope this helps. Sue

[catblue1865]

I too am fed up with being ignored , been trying to get diagnosed for nearly 20 years, I can identify with having to stay in in darkened rooms, mines because of extreme skin light sensitivity, I've just seen a consultant rheumatologist in bath who is ordering one other test to do with raynards, but said my low a.n.a level wouldn't even register as positive with them, feels like they always come from a place of scepticism, treating the science as more important than symptoms, I'm not being much help, they can test urine to make sure there isn't too much protein in it

[StriatedCaracara in reply to catblue1865]

They don't even know the science. I think they clutch at straws with a few tests and make out there is some sort of link with whether or not we have a condition. Things are more complex.

They could involve those not testing positive or positive enough, in their research then they might be able to plug the gaps in their understanding.

Here are links to posts.

1 Biomarkers and how used in Rheumatology - at one point saying they are not always realiable,

healthunlocked.com/lupusuk/...

2. Dr Donald Thomas on the need for new tests, adding they are availabl e but just not used: healthunlocked.com/lupusuk/...