I am feeling very down and confused, but I have just got MRI results back and shocked to be told I may have vasculitis. I am 49 years old.
I don't want to bore you with all my ailments but this is a run down of what has happened. I need some guidance, if anyone can help please.
I have cold urticaria where I react to the cold, under 16 degrees I come out in hives that burn and itch. I was diagnosed with this 18 months ago. Because of the above they checked for protein in my blood and I have IGg lambda 4gl and have been diagnosed with MGUS. The levels have gone from 2-4gl in 6 months I have to be checked every 6 months because of the risk of Myeloma.
I have pain in my legs from my hips to my toes, my legs often give way and I have shooting pains, this is constant and its got progressively worse over the past year. I was sent for an MRI on my back, which was all clear apart from facet joint problems that I was already aware of.
I was then sent for an MRI in my brain as MS was suggested. I got the results this week. I have Multiple, nonspecific, T2 and FLAIR hyperintensities in the bilateral frontal and parietal supratentorial white matter. No specific features of demyelination. and it goes on to say that this may represent chronic small ischaemic foci and questions vascular risk factor.
My doctor has tried to refer me out of the area to a vasculitis specialist and the wait for an appointment is around 3 months. That's the hardest part is waiting, then getting referred then waiting again. In February I saw a rheumatologist, she did some blood tests asked some questions, asked me to touch my toes and said I was fine. I have seen a kidney specialist last year, she said I haven't got Vasculitis as I wasn't ill enough! This was all before I had the MRI on my brain.
I have a weak-medium positive ANA and a positive PANCA
My GRF is 74 and I often get kidney pain and protein in my urine
My ESR is 23.
I don't think the stress is helping as since I got the results I have felt worse than ever. I am really worried and not sure what to make of all this. I don't feel well a lot of the time and very tired, but feel my doctor doesn't know what to do either. I don't know if the leg pain is connected, but that was my main reason for getting a diagnosis and I seem to have found lots more problems and opened a can of worms.
Can anyone help me please?