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Hello, I'm new to all this so I'm afraid I can't offer any advise as yet but it's fascinating to read about this illness from others who have it. I have been very poorly since May, I was very lucky that I have great Doctors who have done every test under the sun, but until last week came up with normal findings. I've had the usual x rays and blood tests, we have been down the route of possible MS (long story but I have eye problems, numb patches breathlessness and hypersensitivity) but my brain scan was clear. We were at the point of considering ME or Fibromyalgia or something similar. Anyway I have complained that my veins are enlarged on the left side of my neck and I do get breathless very easily, but after 2 separate consultants (acute medicine and neurologist) had examined my neck they convinced me it was normal! After seeing recent photos Of myself I decided it is definitely not normal for me so my lovely GP referred me for a ct chest scan to ensure that I didn't have a rare tumour or something similar that doesn't show up on x rays. Last Thursday he called me in the evening(always a worry lol when doc calls you out of hours) to say that the scan had shown several sarcoids behind my heart and lungs, he said the largest of which is 3.2cms by 2.1cm, I think that's what he said but I was in shock at the time! I have an appointment with him to discuss more, and he is referring me to a specialist. I think I was wanting to ask if anyone else has had the problem with their veins? I do not and have not had a cough so I am also wondering if my sarcoidosis is not in my lungs and is somewhere else? Thanks in advance for any feedback x
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