Fmf familial Mediteranian fever

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i have been suffering from this debilitating Chronic diseas all my life, I was diagnosed  back in 2006 by a geen 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 house work 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 stoke I have been suffering even more, emotionally and physically. 

Since September last year, I have been chased by Centerlink, 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, Centerlink had cut me off, I have appealed, and now waiting for the tribunal decision. In the mean time 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 exrays. 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 advoce 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 Centerlink 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.

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7 Replies

  • Posted

    Wow! It made my head spin just reading your post. I'm so sorry you're going through all this, and that your husband passed away. Do you live in Australia? Maybe someone on this forum also lives there and can help you. I'm in the U.S. It sounds like you're sorely in need of an advocate who can help you out. That could be a family member, or some kind of ombudsman who's familiar with the government bureaucracy. It sounds like you have an illness other than ME/CFS (for which there's no diagnostic test). The fact that there is such a test for your illness (a geen test?) is a good thing and can only help in getting disability. I really hope you can find someone to help you out.
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  • Posted

    Thank you, 

    yes, I'm in Australia, the birocrasy here is getting reticulous. The gene test has confirmed my illness in one mutant, the other mutant is not found. I visited a specialist that I paid privately $400, he also confirmed my disease, but I needed the last confirmation from the specialist at the hospital whom I was directed to through the government, and they're absolutely useless.

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  • Posted

    Jackie is absolutely right, and like her I'm so sorry that you are having to confront an unresponsive system while coping with a very sad bereavement.  My heart goes out to you.  I'm in the UK and know nothing about the Australian system.  Here in the UK we have organisations which will advise on disability and benefit issues so I hope you have something similar there.  The important thing is not to give up.  Someone will be able to help.  If one door closes keep looking for another.  I really hope you get this sorted out soon.
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  • Posted

    Hi there Nevart,

    This sounds very stressful for you right now. Like Mo, I live in the UK and here we have something called the CAB (citizens advice bureau) they help people in situations like yours also there is disability advocacy in my area who help people wth things like tribunals. I am hoping so much that there's something like this for you too. Also, my advice would be to make sure you have a family member or friend with you when you go to the doctors or agency that can help, as well as the tribunal. make an appointment with your doctor (book a double appointment so you have plenty of time) see if there is enough evidence for centrelink from them? Here you can request a copy of all specialist letters to be sent to you. Your doctor surely has details of when you were first told of your condition? Is that not enough for centrelink? I have cfs/me and like Jackie says, there is no actual diagnostic test for that, just your symptoms and normal blood tests. Here there are cfs/me clinics though and so was sent there. Is there a clinic like this you could be referred to? Ask your doctor.

    I hope this is helpful and I hope there is an agency that can help you over in Australia.

    Best wishes

    Beverley

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    • Posted

      thank you Beverly,

      i will try to find those services you mentioned. At the moment I feel very tired and I'm runed down, I just don't have enough energy to fight, or even talk. I just need a break from them all.

      everytime I talk to new people, I have to go through everything, at the end I come out with nothing.

      i will try again though as much as I hate it, I have no other choice.

      thanks again Beverley 

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    • Posted

      Hi nevart,

      I know how hard it is to keep on trying when you're so tired, think alot on here can really understand what you're going through. Rest when you can as much as you can. Good luck with this. Let us know how things go.

      Beverley

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