Lupus / auto immune conditions

[Icantbuystrawberries]

Anyone diagnosed with lupus happy to share how they got diagnosed? Or other autoimmune conditions?

It’s been mentioned around my tiredness/ aching ankles / itchy lips and mouth and seeing a rheumatologist next week. It goes away then comes back.

Just wondering how it’s diagnosed as it seems quite difficult?

My daughter's was diagnosed through history, blood work and biopsy.

I've got one. Diagnosed through repeated blood tests and medical history.

I got one through symptoms

Ahhh so sounds like more blood work next week then. Thanks!

It took a very long time. I began to feel flue like all the time. Then pain began to radiate around my body and I had terrible brain fog. I just could not take anything in.

I kept going to the Dr who kept brushing off my symptoms. For a long time, my blood work showed an inflammation but the Dr didn't think this was an issue. I also had chronic fatigue and insomnia.

I wasn't tired, I just had no energy. At some points I couldn't get up off a chair. It was as though someone had pulled out my plug. I also had a rash on my lower legs.

I insisted on further investigation and was sent to Rheumatology. I explained my symptoms to the rheumatologist who diagnosed me almost immediately with Sjogrens.

They prescribed Hydroxychloroquine which didn't help. That wasn't the end of it though. Drs kept insisting I didn't have an autoimmune and had fibromyalgia and chronic fatigue.

I eventually had a lip biopsy and it was confirmed. The whole process took years.

Mine was diagnosed on blood tests, symptoms and I also had X rays ( RA). Good luck for next week 🤞

I'm here now. My symptoms in the poast 4 years have been;

• dizziness (diagnosed as vertigo, and given exericises but nothing has helped)
• rash on nose and cheeks
• rheumatoid arthritis symptoms all around my body - hips and back mostly but travels. Most recently in my feet and wrists
• distended abdomen
• I have had 4 full bloods in the past 24 months and they always show 'an infection, unspecified' and the GP says 'did you have a cold when you had the test?' - no
• sweats which i put down to menopause
• alternatively either high white blood cell or low blood cell
• exhuastion.... I am in bed usually by 7 pm and asleep soon after. Can barely drag myself through the day
• a couple of years ago I had massively enlarged lympnodes in my neck. These were mis-diagnosed as lipomas and I was told they were cosmetic only and would not be removed. So i went to a private consultant to get them removed and he said that they were not lipomas and I got a biopsy that said they were not cancerous but the result of a massive infection in my body- cause unknown.
• This week I got my latest blood results and my kidney function has gone from 80 percent 14 months ago to 62% now. The GP said 'drink more water and we will test again in a month'.

Today I was researching diet for kidney issues and came across lupus and tbh it all seems to fit. I'd be grateful for anyone who might have experience? I have written a letter to my GP detailing the above. I have not physically seen my GP since 2019... every blood test has been done after I did an econsult saying I felt really unwell. I think the rash on my face - if they had seen fit to see me- might have alerted then perhaps?

I had routine bloodwork that showed low B12. I was then tested for intrinsic factor antibodies and those came back very elevated. Diagnosed with Pernicious Anemia and now receive monthly B12 injections.

It all seems a bit surreal as I've never had a single symptom! I would have never guessed that anything was wrong had I not had that bloodwork done.

Unfortunately it's not unusual to have more than one autoimmune condition so I'm less likely to ignore vague symptoms. I do see a doctor who specializes in autoimmune diseases. I'm also aware that PA puts me at increased risk for gastric cancer so that's something I need to be aware of.

I have pernicious anaemia- diagnosed about 2 years ago. That is why I have relatively regular blood tests- to see what is going on with that. I;m not on the injections though- just very high B12 tablets.

I sort of think that all the little jigsaw pieces are leading to something which has not yet been pinned down

Late to the party on this one, but I have lupus, diagnosed for around 8/9 years. Symptoms for 15. It does take a long time to get diagnosed, I’ve found most GPs are very disengaged.

My symptoms were Joint pain, fatigue, swelling, nerve pain issues, kidney issues, the only thing I never had was the facial rash.

I am now under dual care of a consultant at a local hospital who I see 4 times a year and my GP who I see less.

My day to day isn’t too bad, I work full time in a corporate job, happily married and currently expecting our first little one.

Lupus taught me to listen to my body and when to ask for help, my anti body markers are exceptionally high so I am on meds to stop the lupus from harming the babies development, but on the whole it’s manageable.

i hope you have made some headway with your referrals and bloods.

Keep pushing for an answer. Markers change so if the bloods didn’t show anything, get them done again the next time you feel flared!

Wishing you well x

Thank you so much.

I have made exactly no headway at all. I sent my GP a letter end of November detailing my symptoms and asking to be tested. I had a phone appointment scheduled for 2nd january to discuss this. So more than a month later. The scheduled phone call did not come despite the GP confirming it the day before by text. I am now abroad as my mother is ill so sent in an econsultant request last week asking for the phone appointment they missed to discuss this and urine test results to come via e-mail as I won't be home for a few weeks. They said I would receive a response by last Thursday. I have not. I am planning on now sending them repeated econsult requests and am keeping records for the complaint. I'm so fed up.

My surgery are pretty notorious for being very slow and largely disinterested. In the past I have waited and waited for things and then just gone private. But I have really had enough now.

And many many congratulations on your little one! 💖💝

This is exactly what happened with my diagnosis - fobbed off with GP’s for years. Until I sat down in front of a GP and cried my heart out, at which point she ordered a full blood panel and made a referral to Rheumatology. My Consultant said suspected lupus first visit, and confirmed it on the second.

Keep pushing for rheumatology and I’d ask how you refer a complaint about the practise to the ombudsman or their oversight board. That may get you some traction.

Wishing you good things and take it easy. If it is lupus stress won’t help xx

Thanks so much. I will indeed keep pushing. I am so so fed up with it all.