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16, with polyarticular juvenile arthritis...
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rachiegus
Posts: 2 Newbie
hey, I'm Rachael, just stumbled across these boards when a friend told me about the cineworld £1 tickets, which I missed out on!
anyway... sorry if this is long 
About a year ago I got diagnosed with Polyarticular (affects more than 6 joints) Juvenile Rheumatoid arthritis. For about a year my neck had been really stiff, but my gp gave me painkillers and put it down to my muscles, he also sent me for a routine MRI. About 2 weeks before my scan on my neck, my knees literally BALLOONED up. He once again wasn't too concerned and gave me a course of painkillers. The day of my scan I came home, and started to feel severe pain in my knees. I couldn't move atall. I couldn't get up the stairs to the toilet and when I was lifted off the couch by my mum, I didn't have no balance due to the pain (think the Wizard of Oz scarecrow..) We went into A&E and after 3 days in hospital I was diagnosed with JRA, it affected my knees, ankles, wrists, hips, neck, and jaw. I was put on methotrexate. The following months, I had good and bad days, and was often on a steroid drip in the hospital. Sometimes it has affected me alot and I haven't been able to live as a normal teenager would. Somedays my mum has too lift me out the bath and dress me, and mentally I often feel quite alone, as no one else I know has it at such a young age.. Some people think I am lying :mad: Due to taking immune-suppressant tablets, I am sick alot too... My mum decided to claim for DLA for me, and we was declined and we are waiting for a date for our tribunal. A member of our local citizens advice is coming along with us. The whole point of this thread really was to ask what are tribunals like? It's not like I am the main person of my household and NEED the money, but I can't get a part time job due to being sick or sore and stiff alot. Just any general advice would be nice, or any experiences people have had
thanks
Rachael and Sue (mum)


About a year ago I got diagnosed with Polyarticular (affects more than 6 joints) Juvenile Rheumatoid arthritis. For about a year my neck had been really stiff, but my gp gave me painkillers and put it down to my muscles, he also sent me for a routine MRI. About 2 weeks before my scan on my neck, my knees literally BALLOONED up. He once again wasn't too concerned and gave me a course of painkillers. The day of my scan I came home, and started to feel severe pain in my knees. I couldn't move atall. I couldn't get up the stairs to the toilet and when I was lifted off the couch by my mum, I didn't have no balance due to the pain (think the Wizard of Oz scarecrow..) We went into A&E and after 3 days in hospital I was diagnosed with JRA, it affected my knees, ankles, wrists, hips, neck, and jaw. I was put on methotrexate. The following months, I had good and bad days, and was often on a steroid drip in the hospital. Sometimes it has affected me alot and I haven't been able to live as a normal teenager would. Somedays my mum has too lift me out the bath and dress me, and mentally I often feel quite alone, as no one else I know has it at such a young age.. Some people think I am lying :mad: Due to taking immune-suppressant tablets, I am sick alot too... My mum decided to claim for DLA for me, and we was declined and we are waiting for a date for our tribunal. A member of our local citizens advice is coming along with us. The whole point of this thread really was to ask what are tribunals like? It's not like I am the main person of my household and NEED the money, but I can't get a part time job due to being sick or sore and stiff alot. Just any general advice would be nice, or any experiences people have had

thanks
Rachael and Sue (mum)

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hi big hugs and welcome here, i cant help you with what a tribunal is like but i was refused DLA and argued with them for about 9 months and just before the tribunal date they decided to change their minds and gave me hrm and lrc.
i have got degenerative disc disease (with arthritis in my back) and psoriatic arthritis in most other joints, i have not long come off mtx as i had bad reactions to it so i am waiting to go back to th rheumy again for more tablets/jabs.i have known that i have had arthritis for over 2 years but i was only diagnosed last year when i was 33
have you looked at www.arthritiscare.org.uk/ its got a very good forum where u can talk to others with your questions who suffer the same and even youngsters on there 2.
hope this helpsalways send a smile as it costs nothing..
:beer:0 -
Hey thanks for the reply
what problems did you have the mtx? I was on the pills but they wasn't strong enough, so now im on 25mg subcutaneous injection weekly, It makes me so sick, but I have just been prescribed Omeprozole so hopefully that will help
So happy to hear you got your money without the tribunal xx
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i have been on sulfa tablets since last november with no side affects nor no effect on my joints so they decided to add mtx to it and i was just poorly sick they didnt agree with me and sent my joints into a massive flare up after 2 weeks on mtx they told me to stop it as i had been stuck in bed with bad flu like symptoms i ended up having a steroid injections just to calm it down which is now wearing off after 2 weeks
o well im hoping to have my next rheumy app within the next 2 months and hopefully get onto something else and along with the impending (hopefully) sun i should be more settled until the winter. anyway we are not meant to discuss medication on here.....
have a look at the other forum with the link i provided and you can discuss anything on there and it will give you a lot of insight/hints/tips with learning to cope with this auto immune disease and people like you/me and others who need help with dla/esa and form filling etc, and they are a lovely group of people as well xalways send a smile as it costs nothing..
:beer:0 -
The Tribunals are basically a place where you go in and sit at a big table opposite some people who will ask some questions about how you feel, whether you need help for things, and so on. You tell them exactly how it is, not hiding stuff or being embarrassed by anything, as it's all relevant - walking, washing, finding your way around places, dealing with time of the month, side effects of the meds and so on, and how you need to be helped. They then decide whether they think DLA has made a mistake and if they do, they let you know quite quickly.
It's sort of like sitting in a room with the Head Teacher and a deputy or two. But you're not in trouble, so it's not even as bad as thatI could dream to wide extremes, I could do or die: I could yawn and be withdrawn and watch the world go by.Yup you are officially Rock n Roll0 -
Jojo_the_Tightfisted wrote: »The Tribunals are basically a place where you go in and sit at a big table opposite some people who will ask some questions about how you feel, whether you need help for things, and so on. You tell them exactly how it is, not hiding stuff or being embarrassed by anything, as it's all relevant - walking, washing, finding your way around places, dealing with time of the month, side effects of the meds and so on, and how you need to be helped. They then decide whether they think DLA has made a mistake and if they do, they let you know quite quickly.
It's sort of like sitting in a room with the Head Teacher and a deputy or two. But you're not in trouble, so it's not even as bad as that
I don't know about anyone else; but I found that it wasn't intimidating or anything like that.Sealed pot challenge #232. Gold stars from Sue-UU - :staradmin :staradmin £75.29 banked
50p saver #40 £20 banked
Virtual sealed pot #178 £80.250 -
Hiya
Just wanted to say good luck too!
I got Arthritis in my joints when i was around 13 (24 now)
First started with my one knee which was swolen, then started to effect other joings too (Knees, Feet, Ankles, Jaw + Arms etc)
I got DLA (Cant remember what age) but was on High Rate Mobility (Cant remember what care) but did have to appeal once my 1st award ended to keep getting it etc!
I was first on sulphasalazine at first for several years, on methotrexate now tho!
The arthritis did go for a couple years but has since come back a lot worst and effecting more joings, the DLA really helps as im just about managing to work 16 hrs a week at the moment!Make £10 a day Challenge June - £1700 -
Hi Rachael & Sue,
I think Jojo the Tightfisted has summarised the tribunal pretty well: there is usually one 'legal' representative who will make sure that the guidelines set out are followed and that any decisions made are within these. There will also be a medical specialist, usually a doctor and another person who is either disabled themselves or has experience as a carer. Like Jojo said; tell them *everything* you can about how this affects your day to day life, not just physically but emotionally and mentally because it all counts.
I've been registered disabled since I was 8 (I'm now 27) and have experienced 2 tribunals; it can be stressful but the panels are usually very welcoming and put you at your ease. Once they've asked you some questions, you'll go back out to the waiting room and they'll call you in when they've reached their decision. The fact you have a representative from CAB is good; maybe contact them as they should be able to give you more specific details about the kinds of questions you might be asked (I'm afraid my most recent one is a blur because I found it quite an emotionally distressing period leading up to the tribunal!)
Actually having that decision relayed to the appropriate DLA department and actioned can take some time however, so bear that in mind!
Wishing you all the best x0 -
hi rachael, i read what you have written & felt i just had to let you know that you are not alone with this. my 5yr old daughter has Polyarticular Juvenile Rheumatoid arthritis, she was diagnosed when she was 18 months old...i had dla for her for 3yrs & when it came to renew, i was told that because her condition is under control with methotrexate,folic acid,nurofen & paracetamol, she is no longer entitled to dla. i have asked them to look at my claim again & dont know what the outcome will be. if you ever feel alone or down, please speak to someone, feel free to contact me through email, or on facebook ..please dont ever think that you are alone in this.0
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