Update on hubby

[MrsKnight]

Now forgive me if I repeat myself as i forget what Ive said n often get lost[:D]
Hubbys condition is called Ankylosing Spondylitis - Ive just got round to being able to say it properly[:D]
Hes doing ok, we are at hospital every week for Iron Infusions, they thought one course of 6 weeks would do it - but now its going to every week from now on, possibly cut down to every 2 weeks.
They still dont know why his blood is all to pot hence the infusions, and on a scale of 1-10 hubbys main condition is at about 9.
the medication he is on now is making things a bit better - but we are still waiting for the funding part to be okayed by whom ever does that!
His second condition is crons deisease (I cant spell!) & we are yet to look at that still.
We are getting on & accepting it - its all you can do isnt it, Hes still managing work & I manage everything else including the boys. Though work are becoming forgetful again n the season is picking up & work is as busy as ever (large hotel holding 140).
Alot of hubbys family are saying go on the sick but its not as simple
as that - plus if it gets any worse then the consultant will sign him off for good.
I get alot of stick of his family sometimes as they see me at home & him at work, but I could never earn the wage he brings in & I am still looking after the home, hubby, boys, (sister occasionally!) & my mum & dad whom are doing really well. Though Mum is going down hill very quickly now - we are seeing changes every week, though she is still off the pop & being a nicer person.

Anyhow sorry if ive repeated myself & hope your all well x

[plasticdaft]

Hope hubby is better soon,his AS should be controlled by medication and exercise/physiotherapy I hope. Did he have any idea what he had before the diagnosis??

Paul

[kallis3]

I'm glad you have a diagnosis Lyns.

I think Crohns Disease can be controlled by diet. I've just looked it up on Wikipedia!

If he can go to work and be ok, then let him do so.

Don't listen to hubby's family - you sort it out between yourselves.

Hope your mum doesn't get any worse.

[Shining]

Glad you've got a diagnosis Lyns and like Jan says sort it between yourselves you two know best x

[MrsKnight]

The crons part has not been confirmed its just what consultant is thinking n waiting on blood tests.
His AS is at its peak - his neck is fused & lower part of his back is fused - he has been through every tablet they can give him n nothing is making much difference. They are waiting for either 2 types of injection medication to authorised as the cost to NHS is 11,500 a year.
Hubbys AS is the worst the consultant has ever seen and his AS has progressed at an incredible speed, Consultant has even had students in a few weeks ago to practice on diagnosing & examine hubby! I cant explain how restricted his neck & lower back is - but he cant turn to look round in the car - he cant even look over his shoulder anymore. The boys can out run him now as he cant run!
We are just waiting for the drugs & physio has been ruled out as its to far gone!
We thought he a slipped disk or along those lines - something that could be fixed. But hes been to & from the doctors for the past 8 years! Its been horrendous not knowing all this time & the strain its caused has been awful.
He still has days where he finds moving hard & is extremely stiff for hours upon getting up in the morning. I got really fed up of it an one stage & thought he was putting it on - till I met the consultant, he changed my mind very quickly! The crons is unconfirmed but consultant has discussed it - they are still looking into why his bloods are a mess & what could be causing it, they are still not sure why one his legs keeps blowing up 2 twice the size of the other, Im not kidding either, you could see it through his jeans today & it was throbbing.[:(]

[plasticdaft]

Are they considering surgery at all??

Paul

[MrsKnight]

Nothing mentioned so far - they think theses injection medication either adalimumab or etanercept at the moment - but like I said waiting for funding to be confirmed or not.
Are you in this kind of work paul?
Forgot to mention when hubbys diagnosed his first question was is there a cure & the answer straight away was No. Its only managed through medication. It can stop, slow down but no cure & just looking through the leaflets nothing can be done through an operation.

Thanks for your interest paul - its good to get different views.

[Julie]

I'm glad you've got a name for his condition now Lyns and hopefully the medication will soon kick in.

As for the family...I agree with the others. You do what you & hubby think best and staying at home running everything plus worrying over hubby can't be the easiest of "jobs".

Fingers crossed for your Mum too xx

[debtmountain]

Hi Lyns,....Hope you're ok hun?...I'm glad you've finally got a diagnosis for hubby's condition at long last,[:)] 8 years is a heck of a long time to have not known what was wrong with him!...Let's hope when the medication kicks in that your hubby starts to feel better!...Sounds awful at the mo with what he's going through!...Hope your mum doesn't get any worse, at least you live close by and can keep an eye on her which must help!...On a different note re: previous thread a few months back, I've finally watched Peppa Pig,yay!![:o)]....Try not to let your hubbys family get to you hun, you're doing a grand job doing everything already which can't be easy at times bless you..But you both know what's best in the long run.....Take Care Both...xx[:)]

[plasticdaft]

Nothing mentioned so far - they think theses injection medication either adalimumab or etanercept at the moment - but like I said waiting for funding to be confirmed or not.
Are you in this kind of work paul?
Forgot to mention when hubbys diagnosed his first question was is there a cure & the answer straight away was No. Its only managed through medication. It can stop, slow down but no cure & just looking through the leaflets nothing can be done through an operation.

Thanks for your interest paul - its good to get different views.

I work for the ambulance service. But have an interest in all things healthcare/medical/hospital etc.

[MrsKnight]

Thank you plasticdaft - sorry for being nosey x

[plasticdaft]

You can be as nosey as you like Mrs K!!

Give Mr K our best wishes when you see him next.

Paul