I’ve finally seen a rheumatologist and he wasn’t able to give me a diagnosis as he says I don’t present the classic symptoms for any one particular autoimmune disease but I have overlapping symptoms of more than one condition. The hair loss and rash seem to be puzzling them too. I’ve been prescribed an anti malarial Dmard and am having a steroid injection in the new year as they discovered I also have a urine infection and need antibiotics so couldn’t do it today. Anyone else not fit the classic symptoms box? Was hoping for a diagnosis as been really struggling but at the same time I wasn’t just fobbed off with being told I’m getting old or menopausal.
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Yes, it's not uncommon - undifferentiated connective tissue disease. After several years of feeling ill I was diagnosed with this, however I have now gone on to be diagnosed with Sjogrens with secondary Fybromyalgia. I had lots of different symptoms for years, and to be honest, many just became 'normal' to me. 18 months after my original diagnosis, I had to go private again (the NHS forgot to send me my 6 monthly appointment and my gp wouldn't chase it...) I went back to see him. I'd developed issues with my eyes, sinus, crippling headaches and my nose was dry leading to bleeding. I take Hydroxychloroquine, Amitryptiline for nerve pain at night, Fluoxitine for Raynaurds syndrome and steroid injections. I now feel able to cope and know I'm not going mad, I used to think it was all in my head 🤔! Take some relief from your diagnosis and be mindful of other symptoms that creep in x
My lupus symptoms were uncommon, they started with bamboo nodules (extremely rare) which threw everyone off for years. Then pericarditis moved us toward lupus as a working diagnosis, and later I developed joint pains, which is part of a more classic symptomology. Unusual symptoms are a pain in the butt, especially when they get misdiagnosed. All I can say is it sometimes takes a while for sufficient symptoms to surface to assist with diagnosis. Good luck!
Welcome to the club. I never thought I'd put this in a sentence but I was lucky enough to get an Antiphospholipid syndrome diagnose due to multiple blood clots. The rest of my symptoms on the other hand like you overlap lots of boxes but don't tick enough of one in particular. Rheumatologist thinks it is lupus but with negative blood won't treat. Until then I get 6 monthly bloods and put in the undifferentiated connective tissue disorder box. It is frustrating but at least with my new doctor I am being listen too.
My partner had 2 positive Ana blood tests loss of hair bad rashes raynauds lived reticalus rash joint pains ccp blood test 134 was told by doctor 95 percent sure you have lupus seen rheumatology and he says its down to smoking no medication what so ever so at least you have medication and sounds like your rheumatology are doing something good luck with everything
He's gave up when the rheumotoligist said to him Ana doesn't fluctuate and both were positive and even if it was a positive negative with lupus it always fluctuates he's just living with it now and said they won't do anything till he ends up really bad so no point I guess that's men for you
Hi. It can definitely be frustrating waiting for a diagnosis but it usually does take time. At least as you say you've been listened to and have been started on treatment.
Lupus UK has a great diary/tracker. Keeping a record of symptoms, photos of any rashes, joint swelling, other obvious signs can be helpful.
I'd been either misdiagnosed or fobbed off for a long time despite a history of autoimmune problems since childhood and a few medical incidents with missed opportunities for the correct diagnosis .
Finally diagnosed with SLE but also present with some symptoms of Rheumatoid Arthritis.
People with one autoimmune condition can develop others or have crossovers.
Hoping the treatment will begin to help. If it's Hydroxcychloroquine it can take a little while to begin to control the inflammation but the steroid injection should give some relief until the Hydroxy kicks in. X
Yes it’s Hydroxychloroquine I’ve been prescribed. Hopefully once it’s in my system I will start to get some relief as this current flare has been going on since June and I’m exhausted
Hi. It can take a little while but you should start to feel a difference. I was also sent to a Cardiologist by the Rheumatologist. He also said the cardiac related problems I had were caused by Lupus. Like buses, no diagnosis for ages, then two at the same time.
I was diagnosed with UCTD this year. My blood tests showed autoimmune activity and I have varying symptoms but not pointing to one specific condition or another. I was happy with this as it acknowledged what was going on and I was given hydroxichloriquine which is working really well. It is a diagnosis to my mind. All the best.
Hi. Hair loss, the butterfly rash, photosensitivity rash and random rashes were symptoms that the Rheumatologist said were linked to my Lupus pre-diagnosis. Some people are diagnosed with Lupus by a Dermatologist. It affects the skin in most people with it.
It's part of why it can take time to get to the correct diagnosis because there's such a range of symptoms. X
If more research was done on this group and greater interest taken, it might help to establish, with better clarity, the immunological response pathways that have been altered in systemic autoimmune diseases generally.
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