assessment for blue badge today, yipee!!!!!!!!!!!... - LUPUS UK


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assessment for blue badge today, yipee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

beckybooboo profile image
12 Replies

Why is every claim a battle? Im on lower rate dla and appealing against that - I cant work because of my illness and still I have to fight, still trying to reach a definitive diagnosis one minute its Lupus, then seronegative inflammatory arthritis, then fibromalgia and the rest of the time its all in my head!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Weight loss, aching joints, fatigue, hair loss, rash on chest/neck, brain fog, terrible night sweats, very dry eyes, mouth sores, pebble effect on soles of feet, lower back pain, elbow, hands, feet, ankles, upper neck pain - on top of just those symptoms I can remmember - depression too! Help!!!! I cant keep fighting this is 2 years now and im tired i cant fight anymore.

Will have my dla hearing just before christmas - nice - SOOOOOOOOOOOO bloody fed up with the lot of it!!!!!!!!!!!!

Sorry, i know im probably one of the lucky ones lots of people wait years for a diagnosis - still i have a referal to guys hospital end of month for second opinion - so perhaps i will get an answer? fingers crossed.

Sorry for the moan xxxx

12 Replies
jeevan05 profile image

Aww glad its all working out I know what you mean about claims, my insurance claim was declined yesterday made me feel awfull, like u im 39 head ach pain in my jaw, no one understands I wanna fight back but after 7 months im tired.. I will appeal that's what they want for me too shut up this morning a new day and i will appeal the decision,as i am suffering.

maalidog profile image

I was placed on blind register because almost 30 years of taking chloroquine robbed me of sight and when social services sensory worker came to see me she directed me to DIAL who she said would make a claim for dla, I went to them and the guy took all of 5 mkins (wow wee) to gather facts, said it would be no problem and I would definitely get dla, it took 2 minutes before I got a letter back saying no chance. a charity that my husband is involved with wrote to benefits on mhy behalf saying they were going to launch an appeal and can you believe it it took 2 minjutes for benefits to write to me saying I had been given lower rate dla and that was without even getting anymore info etc, the mind boggles, so perhaps you could try some sort of organisation/charity as younever know, the peoplethat helped me was sailors advice information line (SAIL). I feel for you, it,s bloody murder trying to get anything done nowadays, perhaps we should all be a drug taking, scamming, fraudulent, mugging, burglaring type criminal, then we would get it all without asking.

dgleds profile image
dgleds in reply to maalidog

thats what they will turn people into ,you are right! The amount of stress around these days, is helping to create disease too.

Lesley-chard profile image


I also had a second opinion at st Thomas /guys I'm sure you'll find it's the best thing you ever did. I find they're more thorough and gave me a helpline no for if I needed a depo shot while methotrexate kicked in. I've never looked back and hope you don't either. What hospital are you at now?

Kind regards


beckybooboo profile image
beckybooboo in reply to Lesley-chard

thank you for responding, im at princess alexandra hospital in harlow, but getting nowhere. What do you do about any tests or blood tests etc that guys ask for? do you have to go there each time? Im going on the 26th of this month and was hoping not to have to as I had a hand/foot scan last week and have requested 3/4 times for the results but to no avail - had my blue badge assessment yesterday but not going to get my hopes up coz to your face it seems positive - im afraid I cant believe it til I get it in writing. Thank you Lesley x

Lesley-chard profile image
Lesley-chard in reply to beckybooboo

I also was a second opinion there I'm at st Thomas but they're like brother and sister hospitals either can access your notes from the other. It depends on what tests you have some run from guys some from Tommy's I flit between both. You would have to st the start they are v good at if you need multiple tests at arranging them one offer the other to save travelling

beckybooboo profile image
beckybooboo in reply to Lesley-chard

Thats helpful, thanks, it is a bit too far but I dont feel I have a choice now, just hope I get a diagnosis. x

Lesley-chard profile image
Lesley-chard in reply to beckybooboo

It really will be worth it I'm a bit close than you are but will get less I went in August with a diagnosis of sjorgens and now have sjorgens raynauds psoriatic arthritis fibromygia and they link prob lupus too x

tim47 profile image
tim47 in reply to beckybooboo

Can't speak for blood tests at Guys , though their outpatients and various other exams were brilliant when I was there recently, but at St T's they have a department that rattles them off quite quickly. I was then attending Louise Coote Unit for Hughes Syndrome (before they got rid of a load of us) and the bloods were done after seeing the consultants. As Tony Hancock would say,"they had an armful" for stacks of tests. I subsequently asked for copies, very useful for own GP and other consultants outside of Guys/St T's

beckybooboo profile image

Thank you for responding - yeah maalidog your'e so right, what on earth has happened to our society? The thing is I think far too many people have milked the system its made life very difficult for the genuine people that truly have health problems - thank you very much to those who have made many lives incredibly stressful.

Oh dear I must stop moaning about this but it drives me nuts!!!!!!!!!!!!!!!!!!!!!! Constantly having to prove that im not well.


garykeanu profile image

Hi I know tat feeling hav ta fight 4 everything they just don't understand lupus ggrrr, my blood tests were sent to Cambridge university they diagnosed me sum 23 years ago keep ya chin up good luck.. Gaz

field profile image

hi every one, not written anything on the site for a while. To tell you all the truth I am fed up of this never ending story of lupus, fed up of talking about it, fed up of dealing with it, fed up of living with it. Its hard enough living with the awful illness, but on top of this we have to fight to be heard, fight for support, fight for everything, I am sick of fighting!!! Sorry to rant on but that's how right now. I hope you are successful with your blue badge application.

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