I’ve joined to see other peoples experiences of getting a diagnosis of lupus or other autoimmune disease is currently under testing some of comeback my ana came back positive also elevated levels of ESR and CRP. I’ve been suffering with pins and needles and numbness in my arms but I’ve also got swelling in various places of my body, hands under my arm and legs. I’ve had breathlessness, dizzy spells, nausea, palpitations, both tachycardia and bradycardia, Sweats, fatigue which is horrendous and I’ve developed a heart murmur which was found when I was admitted to hospital with a suspected pulmonary embolism and hair is started g it fall out!
I’ve had echocardiogram, stress ECG and they show no heart problems, I awaiting results of an event holter but my symptoms persist I’ve also been referred to a Respiratory Specialist due to poor peak flow output the doctor has referred me for a nerve conduction test and also some further blood test’s I’ve been told if they come back inconclusive I’ll be referred to rheumatology!
I am 35 and a mum of 3 and feel like it’s test, test, test but no answers my mum has autoimmune and has psoriatic arthritis but I don’t get the psoriasis!
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Lmr83
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My lupus diagnosis is quite recent,but in the world of auto immune disease everything takes time.they seem to exclude things,then move on to the next piece of the puzzle.
On a more positive note,since I have seen the rheumatologist ( things have moved a bit quicker.). She’s very pleasant and answers all my questions .hope all goes ok for you
It took over 10 years for a diagnosis because AIs are very tricky little buggers. Treat your symptoms and don’t let anybody talk down to you. You know your body better than anyone else. A medical test is never going to reach the complexity of the human body. Best of luck to you.
You are really struggling. It sounds like they are trying to both diagnose your over-all illness but know how all systems are being affected. So it is good that you are having these tests, though I know it is hard. They need to know how your heart, lungs and nerves are functioning. Hang in there. There is a logical progression to the diagnostics here.
Do not hesitate to ask questions. Remember you are the most important person right now.
When I was diagnosed it was a big relief for me. I had been so ill that I thought I might have The Big C.
It was therefore somewhat of a relief to me to be told I had something that was treatable.
It was still a sense of disbelief, but if you get a diagnosis it's really a first step. This condition is a bit of a learning process. You will gradually learn the best ways for you to cope.
This forum provides others real insights as to how they cope.
As others have said, it can be a long process. I was somewhat fortunate in landing with a rheumy proff who was looking for “interesting” cases. At that point I was wondering what anything had to do with a sore finger (I wasn’t the fastest to notice anything was wrong and had grown up with a mother who was a terrible hypochondriac, so I didn’t want to be the same). Most people remarked on the weight I’d lost, but were too polite to tell me I looked dreadful.
After the blood tests came through, I had lung function tests, heart tests, and a general all over MOT.
I still don’t have any one definite diagnosis but “a bit of this and a bit of that” . I get similar treatment to others. As long as they help me with the symptoms I don’t need a firm diagnosis.
I do wish you well on your journey. I feel very much for you with all you have to handle x
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