can i take this further

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i was diagnosed with hidradenitis suppurativa 2 months ago and I have been going to the doctors for the last 7 years and they have just fobbed me off with antibiotics. i was devastated when i found out as by the time they had investigated i am in the high end of stage 2. i have tried numerous antibiotics now and with the side effects i cannot take them. it is looking lke my only option is the operation. i have taken so many sick days in the past due to pain of the condition and i have enquiried about getting my medical records from my gp and I have to pay £50 and write a letter to the practice manager stating why i need them and then its up to them wether they grant me permission to have them or not. i want to try and take this further as if i was investigated earlier this would have been controlled and would not have got to this stage. for 7 years i was going and telling them there was something wrong i was made out to feel it was all just in my mind and i was only getting boils that had got infected. the pain was unbearable and i spent days not able to wear normal clothing

thanks in advance

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14 Replies

  • Posted

    Mam. I am using only 4 medicines and now it's give me relief little bit but I am also avoiding nightshade fruits and vegetables until I didn't get properly fit. I am also trying to avoid meat and eat fish with salad. Overall if you really wanna to cure self go ahead search hs diet in Google and if you wanna more info how to diet? Then search Catherine *435 and try to follow. I hope you will get well soon.

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    • Posted

      i havent eaten properly in 5 days as the medication i am on has totally suppressed my appetite. i only really ever eat veg and meat.
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    • Posted

      Mam every disease has a cure. Just don't listen doctors to much. Don't lose your hope. If medicines creates trouble 4 you then don't eat avoid for one or two day atleast. Search the Hs patient of this page Catherine435 and see how she cured they are alots of patients who got recoverd just don't loose hope plz

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  • Posted

    I have suffered for 8-9years but was only diagnosed 3 years ago despite numerous visits to doctors just to be given antibiotics.i too suffer severe reactions to most of the successful combination of drugs.i lost my job due to amount of time had off and am not able to hold one down at moment as in and out of hospital so often.

    Along side feeling so rough and the pain it also causes me great distress as not able to live normal life at moment.you have my sympathy xx

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    • Posted

      its horrible isnt im in the care industry and i cannot thank my employers enough for the support and patience they have with me. the pain is unbearable i have infections all the time even when taking the medications.. i hope you cope better soon its a horrible thing to have
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  • Posted

    Hi I too was fobbed off by doctors for years and it was only because a friend of mine has it that I asked to be referred to a dermatologist for a proper diagnosis.  He comfirmed I had it but didn't offer much and he was a total jerk.  He took it very lightly and just told me to go away and be happy and live my life! 

    Most gp's have never heard of it so unfortunately it is up to you to be proactive and look for answers yourself from sites like this,  reading on the net,  and there are some very good HS fb sites too. 

    HS is a highly unfashionable disease which is little researched and there are no ideas on the cause of it.  I was told it was more common in those who are overweight,  smokers or those who have suffered acne in the past (I have).  Not sure if tackling those issues would make much difference though.  I found that one of my biggest triggers was stress but it's hard to avoid that these days. 

    Sorry if this doesn't sound helpful but know that you are not alone.  x

     

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  • Posted

    Hi Tania, if you live in the UK you can get your medical records for free, it is your right by law!!!!!
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    • Posted

      You just have to insist. Online access to your GP records is free of charge.

      However, charges may apply if you wish to see the originals or get physical copies or your health records.

      The Data Protection Act (DPA) covers personal information, including health records. It gives you the right to see your records by requesting a permanent copy, also known as a subject access request (SAR). 

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  • Posted

    I was charged £10 some years ago to get paper copies of my records ie the admin and paper cost.  All I got though was copies of letters and not what the GP had put on my notes,  which is what I was really after.  I wasn't aware they are free online.  Does that include notes gp's put on when you visit them?  x

     

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    • Posted

      i Really need mine too but i refuse to pay £50to access my own records when a receptionist can sit and look for free haha. ill find the loophole and update if i have any luck x

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