12 Months Nearing a Clearing In the Mist? Not sure...

[ferris]

Hi - this is Jay, I'm 41 and live on the Suffolk / Essex Borders. I have been unwell for 12 months with an undiagnosed liver disease. Last year I became unwell whilst mucking out a stable on the farm where I live. I had "man flu" and a rash and a paralysing pain throughout my left side.

This went away after days, a few weeks later the pain was back and I was heavily jaundiced with a bilirubins count of 600+

My jaundice subsided after 4 months only to return for a further 3 months. I no longer look as it was suggested "like an Umpa-lumpa from Charlie & the Chocolate Factory".

I spent 3 weeks in Norfolk&Norwich without any medication or diagnosis and have generally dropped kicked my toys out the pram!

Behcets, seems, as of last week a potential diagnosis, but the latest is that it's probably not just the only issue wrong with the liver.

I have ADHD and have always been hyperactive, my medications are Prednisolone, Myfenax & Alendronic Acid and related bits & pieces. The steroids have obviously wreaked havoc with my metabolism and mental acuity, I have very very little memory of the past 12 months apart from the blinding rages and hyperactivity.

My N&N consultant continually referred to me as an "interesting case" and I have been unable to get hold of him in over 12 weeks despite transferring me to Colchester at my request as I am nearer there than N&N.

I have been in some very dark places these past months, I'm not going to be visiting them again, I have had to fight for my ESA and have a had a rapid crash course in "lIfe" over the last year.......

I'm still floating in limbo regards diagnosis and at present await another liver biopsy, PET Scan and Rheumatologist referral.

I'm looking to get to know people with similar experiences for advice and support.

Thanks for taking time to read my blog - I wish everyone all the best for the season..

Regards

Jay

[John_Mills Volunteer]

Hi .. Please let us know how things go with your results and what happens at your next appointment. I Have been looking up the symptoms of Behcets in the "Vasculitis in Clinical Practice" Book. Apparently there is no diagnostic criteria fot Behcet's disease but the key feature is the presence of orogential ulcers. The ulcers of BD tend to be frequent and multiple but have to differentiated from other types of ulcers.

take care

Susan