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Showing results for tags 'hidradenitis suppurativa'.

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  1. Hi, I have read many posts on this forum but this is now the first time actually posting. For many years I have been living with the dibilitating hidradenitis suppurativa I also suffer from depression. Not a lot of people know about HS and I know from the DWP website this is not in their A-Z handbook and therefore mostly come under a skin infection (which HS is merely not just that). Not even aware I could have applied in 2010 but I had major surgery to remove all the skin and gland from both my under arms and was left with open wounds 16cm long and 8 cm wide on each side oozing continuously requiring multiple daily dressing unable to lift my arms and do things for myself wiithout mjor struggle and more damage for 18 months but I soildiered on with no help from the government and because I dont have a family on my own. I had a small respite then last year around this time I was hit full force with anothr atack of the HS but this time weeping wounds on my groin and inner thigh and top of my buttock. I had 4 months off work (and was subsequently told there was no job there for me anymore as I was on a contract) and spent many days in bed in agony. My doctor (luckily) is new to this condition but we have been going through this journey together trying new meds and treatments and the HS got to a point where it was managable ableit always in pain I like to try and live a normal life as much as possible and will struggle at work where needed as I dont like to be judged by anyone no mater what pain and difficulty i am going through albiet i fail my 1st year uni exams (Mature student) Fast tract to December 2012 yet again the pain becomes unbareable. I am bed ridden for weeks so much so I damage my left side of my back where I have to lay on it so much. My depression gets worse on top of this and I am sruggling to live a normal life. I also start to black out and have dizzy spells (one week I blacked out 12 times), I also start radomly losing control of my bodily functions (GREAT). After advice from as friend I aplied for JSA on 25 Jan 13. By 30th Jan 13 I had a straight not entitled letter from DLA. Some of the things I had written in my application where not even correct such as not being able to cook for myself, mostly being stuck in bed and when not stuck in my house, and my black outs. I gave them a call and they advised I could have a reconsideration or appeal. I thought it was logiacally best to have a reconsideration. I explained my queries to their responses that I had told them on the original form . I was then told it was a 11 week wait for the reconsideration. Fair enough albeit a bit long based on the first review of the case. Since then I have been very up and down. I have managed to get to my doctors only twice via cab and had to miss so many appointments where I have been too ill to attend. My doctor has been to visit me. I have also developed continuos migranes and still get about 5-6 blackouts a week but I also developed seizures and vomiting blood as well as a very bad bladder infection stopping me from peeing. As well as uncontrollable bowl movements. I was admitted to hospital and put on meds for 3 days. They dont think my seizures are epillepsy but due to stress and trauma of everything else going on. I have another hospital appointment on Wednesday this week. I informed the DLA of the changes in my symptoms and my hospital stay as well as new medications I had been put on. I asked at the same time what the status of my reconsideration is to which I was told they have requested more information from my doctor which they received back last week. My doctor is very supportive of my condition and he had to do a letter for my DSA assment for student finance and he confirmed my unability to leave my house and my depression caused by the HS. This kinda of letter for approved by student finance for DSA so I am am not worried about what he has written as the surgery did confirm that he did write the report they requested. This weekend I recieved an ESA ATOS medical questionnaire which my friend is helping me to fill out and she has called DLA this morning for another update and they have now said that they have referred my reconsideration to one of their doctors as they want me to have an examination. Is this normal process on a reconsideration to get a report from a doctor and immediately request their own examination and how will this process happen as I have been reading the forum about the ESA examaniations being full of bull and so now I am panicing. Sorry for such a long post but if anyone could help it would be greatly appreciated. Many thanks
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