Yesterday I had the capillairoscopy, the vascular assistant “scanned” four fingers on each hand (not the thumbs) with 100x enlargement and two fingers on each hand (only little fingers and ring fingers) with 300x enlargement. They asked if I am left or right handed. I’m right handed.
The person who scanned my nailfolds said I have a lot of hemorrhages.
Today I received the testresult from the doctor of internal medicine who looked at the pictures. He literally wrote down three words in the two paged capillairoscopy result form: “totally normal picture”. And he checked the box hemorrhages but didn’t put down one word as explanation. He sent this form (not the pictures) to the hospital where I’m treated.
I looked at the pictures myself and see hemorrhages on six fingers: on the middle, ring and little fingers on both hands. Hereby a picture of my ring finger of my left hand.
I have sent the pictures to my hospital.
I’m hugely disappointed in the test result this internist concluded.
Firstly because it is, in my opinion, not normal to have so many hemorrhages that spontaneously arise on six of my 10 fingers and certainly not normal regarding all my medical issues so far. Secondly because this internist should be ashamed of daring to report three words and check one box without any explanation.
Coming Monday I will have the appointment with the specialist (doctor to be) and I’m so afraid they will just say nothing is wrong with me based on what this internist in a different hospital said….
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Patricia2015
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Unfortunately, some doctors do not seem willing or able to talk to the person aka the patient. One of the difficulties is to do with communication which means that the doctor has to treat the other person as a real person who has come to them for help. It seems that the training of doctors priorities the doctor, rather than the patient and thus the person/patient ends up feeling as you describe.
If you have a doctor (your GP/primary care doctor or rheumatologist) with whom you can talk, I would explain how you are feeling, which includes the sense (please correct me if I am wrong) that you are being dismissed and there is nothing wrong.
When I was struggling to find a diagnosis, one particular doctor, a professor at a London teaching hospital, also believed in not taking to the patient. At one of my appointments, I showed him the haemorrhages around my ankles. he looked over his half-moon glasses and without moving from behind his desk replied, "Your socks are too tight!" I was neither wearing socks at the time nor did I wear anything other than tights! Of course, this was an example of inflammation ie vasculitis. This was very disheartening and rather irritating to be spoken to as if I was a child or someone with Munchausen's syndrome.
We want to be treated respectfully and appropriately. We want to hear an explanation of our symptoms and not feel, "it is all in our heads!" which unfortunately is the case with many patients. Since the majority are women, we are made to feel by some doctors (not all by any means) that we are either too hysterical or too stupid to understand.
In case you are wondering, this consultant rheumatologist retired and eventually saw a lupus specialist at St Thomas' Hospital, London who is one of the top lupus specialists internationally. It is essential you find a lupus specialist with whom you can have a doctor-patient relationship that is both supportive and helpful.
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From my quick search it would only be normal if you had a major injury to you hands or fingers. I have this in my fingers especially knuckles and eye lids during flare ups. Hopefully some one who sees the film's will realize that is not normal.
I understand the frustration because I deal with the same issues. It must be a lupus thing.
Ros is correct that it would be a good idea to see a lupus specialist. I do not even know if they have them where I live but want to look into it.
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