A Reality Check

Hi Folks

I'd like to write and say hi and share my story with you all.

I'm in Canberra, Australia and was diagnosed with BD last week after 15 years of progression of the disease. I was being treated for RA and had sought second opinions without much hope. Needless to say that I was actually relieved to hear the Immunologist confirm what I'd thought was the disease I'd had following years of research and a barrage of tests.

I have central nervous system involvement, severe migraine-like headaches and brain lesions along with the ulcers in the mouth and genitals and skin lesions. Fortunately for me, I don't have eye involvement except for dry eyes. I wasn't on any medications for about two years as I have a liver with elevated enzymes which reacts with the drugs. The progression of my disease worsened and I'm still hoping that a treatment plan will now be put in place to manage the ongoing flares and understand that any improvements may take considerable time.

Waking up each morning feeling like I've ran a marathon before heading off to my hectic full time job is a challenge as I'm trying to maintain a normal life as long as possible even though I spend most of the weekend recuperating from the week before. The extreme fatigue seems to be the most frustrating factor for me as medication doesn't help with it.

I'm 53 and I have three wonderful grandchildren and a very supportive, caring husband along with a caring family and medical team. These factors give me the courage to live my live as best I can acknowledging that I can't do the things I used to.

I'm off to the Rheumo next week to work through a treatment plan (on Imuran 50mg twice daily pre diagnosis, arcoxia, gabentin and others) and ask for another series of scans as something is not right in my lungs and ribs with pain and tenderness so hopefully they'll pick something up in the tests. The frustrating thing is that my blood tests only show minimal readings and the specialists have to rely on my logging of clinical symptoms to give to them each visit.

I'm aware that BD is very rare in Australia and am keen to keep in touch with everyone managing this terrible and painful disease which brings us all together in this forum.

Having a rare, complex autoimmune disease is a lot to get your head around.

Thanks for reading and I wish you as many pain free days as possible.

Kind regards

Vicki

6 Replies

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  • Hi Vicki

    Looks like thinks are starting to take off in Australia!

    I live at Dapto near Wollongong.

    The card that BD society gives you to carry in you wallet states 'ESR, PV or CRP values do not correlate with disease activity, nor are there any indicative measures in blood/biochemistry' - that would account for your blood tests being minimal (mine are too).

    Talk soon

    Lesley

  • Hi Lesley

    Thanks for the advice - do you know how I go about getting the card?

    cheers

    Vicki

  • Hi Vicki - I joined the BD Society in the UK - I think it was a $30 donation and the card came in the pack.

    Also I'll PM you.

    Lesley

  • Hi Vicki;

    Behcet Syndrome Behcet's Disease Association, and welcome aboard brought us together with the same feelings and thoughts. Disease is characterized by sudden attacks show that insidious course. Here you have a very warm and sincere union, was being used drugs do to avoid stomach upset stomach medication use in all patients with Behçet's disease as soon as possible as all my friends remission occurs.

  • Hi Vicki and all,

    Still not sure if all can read what I'm posting.....

    Isn't this just a horrid pain for you all.

    I have just got out of hospital with my daughter after a 4 day stay. May not sound like long, but she put up a fight for the first two days and we left a day early. We were sent home with another medication to add to the list, Gabepentin. This is to help with the pain and shocking headaches. He joints and stomach pain have also been bad, but trully all har symptoms have been. The poor little thing said to me during the week that she just wanted it to end or die. For a mother to hear their child say this over and over is heart breaking. She is right now but I'm sure you all know to stay on top of the blackness, speaking to a psychologist is best. Our daughter is not a moody, snappy little girl but when she's in so much ongoing pain she get's low.

    To top of the week my husband had his appendix out on Thursday. Us in Melbourne he was in Ballarat.

    Right now we are about to go for a horse ride. As her joints and tummy are still painful, I'll lift her on to the horse and we just walk around the farm. Our daughter loves to talk about her horse Flash and cat Stella the Fella with the nurses, they are a great distraction. Fresh air is the best of all medicine.

    Regards,

    Michelle

  • Hi Everyone

    Thanks for the posts and the welcomes, I appreciate your kindness.

    Michelle, I wish you and your family the best on the journey with your daughter - its a tough road for an adult let alone to see children suffer so much.

    My son lives in Melbourne and is studying at RMIT. We've stayed on a farm in Ballarat for a farm stay and I have to say its nearly as cold in winter as Canberra! A lovely place to have a farm too.

    I also take Gabepentin which has made a difference with the small nerve pain but has no effect on my headaches. My doctor prescribed Sandomigran before bed each night which has reduced the daily headaches by about 80% and as it also makes you drowsy, helps me stay asleep longer throughout the night while bothered by the pain.

    Good luck with your daughter's treatment and her well-being.

    Kind regards

    Vicki

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