I'm after some advice and hopefully to sooth my anxiety a little!
A little bit of my back story, for the last year I have been suffering with really bad headaches and dizziness, passing out roughly once a month. I feel exhausted most of the time, i ache all over and I cannot control my body temperature, which is not like me because I usually feel the cold even in the summer.
I have had numerous tests, lumbar puncture for possible meningitis, MRI, chest X-ray. CT scan, temporal artery biopsy, tested for lupus etc etc.
I have had persistently raised inflammation markers for almost a year now.
In February my rheumatologist sent me for a PET/CT and the result was "some evidence of diffuse increase tracer activity throughout axial skeleton," so he referred me to haematology and sent me for more blood tests, my usual ones plus two new tests, serum free light chains, and serum electrophoresis. I have been waiting anxiously for my haematology appointment as obviously I googled the tests and the were pretty much only for multiple myeloma. I've been waiting since mid April and am not seeing them until 18th June, so as time has gone on I have become less anxious and pretty much concluded everything was fine.
I saw the rheumatologist last week and he said it was a waste of time as I haven't had my haematology appointment yet and then looked at when he would see me next and said I had to have a bone marrow biopsy and would have to see haematology again after and it was all said in a really blasé way and I just froze, finished the appointment, and walked out the door without asking him any more questions like, do you think I'm really sick!
I don't know what my blood results are just that after seeing a cardiologist (they are ruling everything out) he mentioned that the light free chains looked clear but I had raised globulins on the other test, but I don't know what that means.
I have less than two weeks now until my appointment but since seeing the rheumatologist last week I have become really anxious again and have googled like crazy and sometimes think I definitely don't but then 10% of me is just so worried about the PET/CT results.
Any advice or opinions would be so welcome. Sorry for such a long post!
Thanks
Lorraine
