FMF - Familial Mediterranean Fever

i have been suffering from this debilitating Chronic disease all my life, I was diagnosed  back in 2006 by a gene test. Ever since I was put on a disability pension. I suffer from recurrent episodes of high fever and pain in all my joints, my life is made of pain, and with at least twice a month sometimes even more often I get high flares.

nothing I was given by my GP that really helped. I may have few hours of the day at times that I feel normal, this is when I take advantage of the time to do housework chores. My husband who was my carer was there for me, helping me on my daily progress, since he passed away (15 month ago) on a stroke I have been suffering even more, emotionally and physically. 

Since September last year, I have been chased by Centrelink, who's telling me that back at the time they accepted my application for the disability I didn't have enough evidence to become eligible for that and had had made a mistake, so they asked me to bring evidence from specialist to do so, it was the time just before xmas.

now everyone knows that to get appointments with various specialists take time. Before I was able to see one, Centrelink had cut me off, I have appealed, and now waiting for the tribunal decision. In the meantime I have evidence from some specialists.

but from the ones that I was gone through the government system to see a specialist in the local hospital, it 5 month for the first appointment, then 2 month to do ct scans and xrays. Now I've been waiting another 2 month hoping to hear from them before coming may which is my tribunal day in May 18. a Doctor called me this morning asking if I have left a message in the hospital about the results of the scans, he said, your scans looking fine, only the liver is fattened, nothing about my debilitating disease or if I'll have another chance to see the specialist so they can advice me about my FMF problems. I'm shattered and so disappointed, he hardly finished talking to me and his beeper was buzzing, he continued saying sorry, I have emergency and was gone. Where am I standing here? What kind of treatment is this, I've been waiting now for at least 7 month to see and talk to specialist and this is what I get. I need a written results for Centrelink and I'm feeling lost. I don't know what to do. This is just a joke. Please help me to understand and get some wisdom here as I'm lost in this government system.