Journey to diagnosis

Hi everyone, hope you’re ok. I’m new here and have been under rheumatology for a year now. I’ve got multiple health conditions and understand that it takes a while to get diagnosed due to the crossover in symptoms. My ANA keeps switching between positive and negative, but the nurse said that happens so don’t worry. It all started about 6 years ago when I had pneumonia in the summer. Up until then I was lucky and rarely visited my GP, I had asthma which was well controlled, hayfever and eczema and used to be really active, going running x4 a week (runs ranging from 3miles to 10 miles) plus the gym in between). When I got pneumonia, I really struggled with my asthma and it became uncontrolled and I was referred to the respiratory team and later diagnosed with severe brittle asthma. My hayfever worsened and I was referred to Immunology where I was diagnosed with chronic rhinitis, but they were unable to treat due to asthma being brittle. I also developed widespread pain and joint swelling, muscle weakness and tiredness and was referred to rheumatology and diagnosed with fibromyalgia - my GP disagreed with the diagnosis and felt that something more was going on and felt my symptoms were a collection that came under the umbrella for “something”. I take low dose antibiotics to reduce the number of chest infections, as I was having 5-6 a year and I’ve also had shingles 5 times! Four years later my GP referred me back to rheumatology due to suspicion of Sjögren’s syndrome, eye consultant diagnosed dry eye with the schirmers tearstrip test and I have a hoarse voice, throat clearing, dry cough, dry nasal passages and positive ANA. Rheumatology wanted to refer for a lip biopsy to confirm the diagnosis, but have put that on hold to concentrate on possible SLE as I developed a butterfly rash October last year which has been present since and get worse in the sun. I’ve had lots of other rashes which I’ve photographed for them and since Christmas I’ve had x2 UTI’s and seem to be in some kind of flare with increased pain/fatigue, headaches and spiking temperatures or having low grade fever and feeling like coming down with something, but it doesn’t develop. I had an appointment last week and they were going to give me a steroid injection to see how I responded, but decided against due to me having a cold sore as they were concerned about my immune system being compromised, so the plan is to have an ultrasound on my wrist and fingers/knuckles to check the cause of inflammation then review me in clinic in 3 weeks to come up with a treatment plan. Is it possible for SLE to have been going on in the background for the last few years?

[Barnclown]

Hello lottie & welcome + thanks for posting: every detail is fascinating, but I’m hurting all over just reading your story.

This is a wonderful forum, so am sure you’ll get lots of great replies, and I’ll TRY to keep mine brief 😉: just want to say that I greatly admire your fortitude & your understanding of your multisystem issues..+ am very much relating cause I had 35 years of consultants & GPs diagnosing & treating what later turned out to be ‘secondaries’ to my main conditions...and then Ah Ha: 11 years ago, we discovered I’d been diagnosed with Lupus as a toddler!

And my consultants say my history + positive response to lupus & co meds confirm this...I’m now regularly attending multiple clinics as well as my rheumatology lupus & vasculitis clinic, for hEDS-related issues, Primary Immunodeficiency Disease-related issues & DES Syndrome stuff.

So I’m living proof that, yes, it is possible to have SLE going on in the background for years....and after 11 years membership of Lupus U.K. + pretty much daily attendance here, I know I’m not the only person whose diagnosis has been a complicated & lengthy process...many of us are right here...many will be relating to your story

I had to hit 56 before rheumatology & immunology recovered my very early diagnosis & started to figure out the combined therapy treatment plan that’s helping me A LOT now...so 🤞 your medics figure you out & get you stabilised soon. Gotta say: your GP sounds great!

Hope you’ll keep us posted ❤️🍀❤️🍀 Coco

[Energy14]

Hello lottie36, Warm Welcome to our Friendly Forum 😊

It seems by what you are describing is SLE. Actually, your symptom history is similar to mine.

Yes, it does take many years for SLE, Sjogren's to be diagnosed.

In 2006, I was diagnosed with M.E./Chronic fatigue. Then 2014, Fibromyalgia diagnosis.

Optician diagnosed dry eye. I was given eye drops throughout day, night eye ointment at night. I wear tinited glasses.

IMPORTANT to note. I have a Fantastic GP. This is KEY to good Healthcare

I had schirmers tearstrip test, lip biopsy, Sept 2019, this gave my official diagnosis Sjogren's Syndrome.

A year later, further blood tests, along with symptology to be given SLE diagnosis October 2020.

I had an ultrasound on my wrist and fingers/knuckles to check the cause of inflammation.

My symptoms are also hoarse voice, throat clearing, dry cough, dry nasal

asthma, hayfever, allergies, vertigo, Sinuses, chronic rhinitis, reflux, Gastrointestinal symptoms, Diverticular disease,

Fleeting pain in fingers/hands and inflammation causes swelling. Sometimes can not wear my rings, or make a fist. Sore and tender feet walking or not.....

Your Rheumatologist will piece the jigsaw together. Join the Dots, this does take time to do.

You will have a team of Healthcare Professionals...Gastroenterology,

Dentist, Ophthalmology, Rheumatology, Physio, Orthotics, Pain Team, GP and YOU to manage symptoms.

Please try not to Over-think, as you are Nearly there Now 🌈 🦋 ♥️

Sending you Love and Hugs 🤗 🌻

[Smudge4465]

Morning, and welcome!This forum I found very helpful!

Lupus Uk are very helpful too.

It’s common that Fibromyalgia is diagnosed but in fact it’s underlying Lupus. Lupus is difficult to factually diagnose as there is not

a specific test. It’s a range of complex tests.

My rheumatologist and dermatologist work together as a team. They are great. Hope you improve but get a firm diagnosis.

Best wishes.

[CecilyParsley]

Hi Lottie and welcome. Like many here I can identify with your symptoms. You obviously have a GP that is dedicated and trying to help you. They are a find so hang on to them. I really hope that you get the answers and treatment you need xx

[Christineosh]

You poor thing, miserable, many people on this site will have had some if not all that you have.First I am surprised you haven’t had a Shingle vaccination, I don’t know your age but you can like flu have one passed 70. I had it for months and the viral tablets did nothing but as soon I was well I had the jab

I have an umbrella from Lupus site that doesn’t allow any sunlight through.I have taken daily vitamin D for years and is very important the further you live from the equator the more likely you will get a disease like MS and immune problems.

I would try the Steroid injection as what have you got to loose, for one they can give you a boost and when you get dragged down by so many problems it’s what you need. My daughter swears by a system called Foodmap, it can help with foods that help build strength without affecting your gut. Food can have a very negative responds in the body and many would not eat the ‘deadly nightshadeS ‘

Sadly Lupus can get everywhere, having had below the belt problems every tests and op has shown Lupus and I am now going to have my painful hip looked at, bizarre in life when you hope it’s a need of a joint replacement rather than Lupus

[Hidden in reply to Christineosh]

Thank you for the warm welcome everyone, it’s nice to know that I can come here for support. I’m sorry for not replying sooner, and thank you for sharing your journey with me. I’m not able to have the shingles vaccination as I’m 45 - I have my annual flu jab because of my brittle asthma / adrenal insufficiency and I had a pneumonia jab once I’d recovered back in 2015. I’m on my second lot of antibiotics for a UTI that was picked up at my face to face last week so been feeling off with that. I’m lucky too that I have a brilliant GP, and the Specialist Nurse and Rheumatologist both seem lovely. The nurse even rang me on Monday to see if I’d had some antibiotics and if I was feeling any better, but I was still having symptoms and a temperature, so GP has prescribed amoxicillin for 5 days, hopefully it will do the trick. I think sometimes it’s hard as I miss not being able to do the things I could do before.

Sending love and hugs to you all 🌈🦋❤️

[Christineosh in reply to Hidden]

UTI need the sample to be sent for proper testing, most have high white cell count and will only go with the right antibiotics. I had always dismissed those cranberry cystitis packets but my Urologist says get them drunk as soon as you feel it coming on as it neutralises the urine. I think the age for shingles jab is general but can’t see any reason not to get the jab. It is terrible especially on the eye area, a friend nearly lost sight in her eye.