I've recently had blood tests and a scalp biopsy following 20 years of extreme hair loss (I currently wear a topper). The past year I have developed what I thought was psoriasis on my scalp but the dermatologist thinks it may be lupus.
I have suspected lupus for a while as I have joint pain, chronic fatigue, malar rash, blood in my urine, frequent nose bleeds, mouth ulcers and random fevers and I'm sensitive to sunlight.
Called my GP surgery and my blood test results are back and have been told a doctor will call me to discuss results. I'm assuming this means they are normal as an appointment isn't necessary. I've been referred to a rheumatologist too as my symptoms are unrelenting.
A part of me is hoping for clear results but a part of me wants answers! Would a GP give abnormal results over the phone?
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Racheal21
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HI Racheal21 I am not an expert but many of your symptoms are like the Lupus ones which I have, my main one is very itchy scalp with patches of hair loss also the fatigue. I hope your GP can give you answers. Best wishes
Thank you for your reply. I am currently nursing swollen sore knees and feet, my GP is not the best and will more than likely put it down to my weight.
Those are a lot of difficult symptoms. And I sure can see why they would create anxiety as you await the results.
It is possible you'll get results like that over the phone, maybe more akin to some part of the biopsy showing abnormalities. ?
I had to do genetic testing for BRCA1 after my sister and then I both got breast cancer a month apart. The geneticist said that I would be brought in for an appointment for the results. But instead they phoned me at home and delivered the news that I was positive for BRCA1 that way. It could have just been time constraints or resources that made them do it over the phone, but it was equally as effective as it would have been in person, I think.
Either way, I sure hope you get some answers soon. It does sound like you will since they've referred you to Rheumatology. All the best through the anxious wait.
Thank you so much for your reply. I have a dermy app next week for biopsy results and I'm just waiting for my rhuemy app to come through. I'm currently a student nurse and need to get this under control as it is starting to affect my studies. I am due to get a phone call this afternoon so will update the post x
I'd be nervous too. Particularly when you're mid setting up for your career. Will watch for your update. Fingers crossed. Though not sure for which direction! I always find a result is better than a non-one. : ) x
From breast cancer -- a resounding YES! And we've both done all the surgery to stop it from recurring. My sister is most thankfully thriving. But I have now developed whatever it is that brought me to this website -- Undifferentiated Connective Tissue Disease in some kind of motion. We had different chemotherapies because my tumour had a rare hormone profile for BRCA1. The chemo I was given pummelled my immune system (hospitalised for neutropenic sepsis) and so I wonder... x
So frustrated. My GP is useless and makes me feel like I'm making this up. He told me all my results except crp were fine. When I asked about the ANA test he was like, oh what's that for? I don't have it here but you don't have lupus. Errrm how can you categorically say I don't have it when none of the lupus specific test results are back!
Racheal21, also, I’m not a doctor however it sounds an awful lot like lupus. I know it’s not what you want to hear but better to know and start treatment especially with your studies needing attention right away. I also wear toppers, was wondering were you get yours from?
You are absolutely right! Your GP doesn't appear to grasp the gravity of the other tests. Not knowing what ANA is for is pretty telling. Not sure if anyone mentioned this, but ANA results take about a month. If it is positive, you probably know that this will trigger an ENA test, which can take another month.
For some reason I thought your GP had the biopsy results and would be giving you those over the phone. Sorry to misunderstand. But since the results were only for straight up bloods, then normal seems just about right. We often come up normal, particularly at the beginning, when there's no medication to alter them, or it's a connective tissue disease that is not in the organs (yet, if ever). It is well known that people often have normal blood results while they have growing tumours. I am a case in point.
I get why this is so frustrating, particularly as it questions your character. I personally felt the pre-Rheumatology time to be one of the hardest times, when I felt I had to prove my symptoms and yet when some would come and go I'd find that I was second guessing myself.
It is excellent that you will be seeing a Dermatologist for the biopsy results next week. (My GP didn't even know about my last biopsy and can't access results of tests done in the hospital.) It's also excellent this appointment will be followed by a Rheumatology one. Those will give you more disease-oriented answers. My ENA results were not in by the time I got to Rheumatology, but she took everything seriously with the positive ANA and the pictures and descriptions of all the symptoms.
Definitely take pictures of the malar rash, mouth ulcers, swollen joints, even the bloody nose. And any proof of your sensitivity to sunlight. Mention the fevers and the fatigue. The Rheumatologist will be expecting this big and disparate list as opposed to your GP, who will only be able to manage a couple things at once. The good thing is that you will soon be in the care of a Rheumatologist, who knows and expects what is going on. And if there is some miraculous reason why it's all nothing -- then s/he will hopefully be able to explain that in a much better way.
It is a rare GP who knows very much about autoimmune disease. Sounds like your GP is not very rare.
Thank you so much. That's made me feel so much better! I got my rhuemy app on 17th July and dermy next week. So by the time I get to rhuemy I should have all my results back. I'm definitely going to take pictures of everything to take with me.
In the mean time I've joined slimming world and I'm hoping that losing weight will help me feel a bit less fatigued. I've slept today away, yet again xx
So glad you're feeling better about it all. And there's nothing like a couple important hospital appts to spur us on to get as healthy as possible beforehand.
Dermy appt has been bought forward to today. I'll get my scalp biopsy results. I'm so nervous that they will just tell me they still don't know what's going on!
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Little red dots on feet
Rheumatology appointment - not sure what to expect
Lupus Screen / CTD Screen results 
Skin pigmentation
Waiting for diagnosis 
