12 months on and still waiting for a diagnosis...any help, advice or just a 5 minute yarn would be greatly appreciated....

[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.

[devonshiredumpling]

Hello Ferris, what a shitty place to be eh? I can't help you much in a medical sense - well, to be honest, I can't help you at all! That's not what we're here for, we're here for the support you so obviously need.

If you've got man flu, does that mean you're a man (it sounds a stoopid question, I know!)? My reason for asking is that, if you are a man, more power to you for being honest about how you feel - not many men are capable of that are they!

As for Behcet's - well, it takes a helluva long time to get a diagnosis for that because basically it's a diagnosis of elimination. Kind of tick box - well, you haven't got that, and no you haven't got that one, or that one! Well, guys, I think you might have Behcets!

I'm unsure about Behcets and the liver but, as the disease can affect anywhere there is a blood supply, it's not out of the question is it.

To cope with this pain, together with the effects of the steroids (I know about those only too well), is very difficult. I'm not sure how the ADHD would affect things but as steroids can make you a bit hyper anyway, it doesn't seem like a match made in heaven.

You keep talking to us and we will keep listening to you. I have found that just the support on offer here makes my illness much easier to cope with.

Oh, yeah - welcome to the group

Di

[devonshiredumpling]

And does the Floyd cover represent how you're feeling right now? That's such an expressive album eh? The way it describes the feelings of insanity in your head is quite incredible.

[ferris in reply to devonshiredumpling]

Morning, Thanx for your reply! I feel much better having discovered the site, yes I am a bloke! I'm Jay, so hello, hi... nothing sinister with the Floyd cover...I'm hyperactive is all! lol and seriously into music...mainly dance....so if the powers that be could have picked a disease to seriously disrupt my life then they couldn't have done any worse! I am awaiting appointments for a PET scan and another liver biopsy oh and of course a definitive diagnosis! Thank Q

[devonshiredumpling in reply to ferris]

We've come to the decision in this group that the disease only picks on those who like to squeeze the pips out of life! All of the regular contributors are strong, independent minded, and funny, so we think those qualities are in the job description for Behcet's Bods

[bailey23]

Welcome Ferris.

We are a caring bunch of people and feel free to whinge and moan and let off steam on here! I have frequently. Feel free to ask questions but as Di said we are not Dr's but can empathise with certain symptoms etc.

Lets hope you are the road to a diagnosis and the right treatment!

Angela

[ferris in reply to bailey23]

Thankyou! - hopefully I won't be doing much more steam releasing....well itz Xmas you can dream can't you! lol. No I hope to have some progress from my new consultant early next week...

[Alipem]

see if your gp will refer you to one of the centres of excellence and see what they say, london, liverpool or birmingham, maybe worth a visit.

[Hidden]

Hi & welcome. It sounds as if you are getting close to diagnosis - some of us waited many years so that is actually quite good! I agree with Alipem that you may benefit from a referral to a Centre of Excellence. I think the one in London is nearest for you. The specialists there are used to working with different conditions - BD sufferers do also have other illnesses and conditions sometimes (lucky us) and at a C of Excellence you would be looked at over all and also specifically if that makes sense. You may see an Immuologist, Rheumy, Neuro - all sorts under one roof in one clinic.

[andreafm]

Hi ferris

I can certainly identify with the "interesting case " label and the "complicated person" label and many others along the same lines. It irritates me as well sometimes. But other times I try to see myself as unique as we all are really, particularly here. It can be of benefit if you have a good doctor as they see you as a challenge.

You haven't said why your doctors think you have behcets and the Centres of Excellance are probably a good place to go for you because of the added conditions and they are used to seeing all sorts...... I also have a list of conditions and so know what this feels like.

It took over 20 years or so of hell to get my dignosis and am releived to see that people are getting diagnosed a lot quicker now days.....so hang on in there.

I too suffer badly mentaly with high dose steroids and get really hyperactive so I can only imagine what it is doing to you mentally, but try and reign it in a bit and use the energy to get your treatment right and if that fails....you can always call on us.

Good luck with the diagnosis

Andrea

[SuenMike]

Hello Ferris,

Welcome to the site. I hope you get a diagnosis from your new consultant soon. As you will find out, the drug regime may take a while to work for you, as an individal.

Keep in touch.

Suzanne x

[ferris]

Thank you guys...not on top form this morning physically - but lovin the PMA! My new Dr is back on Monday .... Have as brilliant a weekend possible! Jay