HSP!

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i was first diagnosed with HSP in 2014 . I had the rash everywhere except my face, i became incontinent due to bowel inflamation and ended up in hospital for 3 weeks on morphine. Since then ive had no rash just the odd bout of bloody pee. 7 weeks ago the rash came back on my legs, over the 7 weeks it has been coming and going it seems to be when im on my feet a lot that day. The pain in my ankles and knees is excrutiating and i feel like nobody is listening. Today i was seen at the docs again due to not being able to hold down food or water for days and i was told that it was a bug. I dont think this is the case as i have a lot of pain in my back and stomach. Due to go back to work on Saturday and just cant see that happening. I feel like doctors are just not bothering and it is really getting me down. Any tips or advice from fellow HSP sufferers?

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  • Posted

    BETH- First, hugs to you. when my son went through this it was horrible to watch, i wished it was me.

    It seems the older you are with this the worse it is. see if there is somebody in your network of doctors that knows more about HSP. push to see anyone who knows more. You were on the right track of keeping notes of how it starts and more of your signs and symptoms . Keep all your daily notes, journal what you can... If the Dr's dont take you seriously, find new ones. You know more about your health and symptoms than they do, so keep track.

    GOODLUCK! ❤️.

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  • Posted

    Hi, sorry to hear. All what I can say that I've not seen rash since I left all dairy products from my diet (no casein, no whey, no nothing which includes milk). My HSP diagnosed in late year 2011. My opinion is that a bad diet (prepared food / junk food) contributes to bad bowel condition. Poor bowel condition absorb food differently and milk is among others full of different hormones (read about the immune response and igg /iga antibodies in the blood). Doctors laughed at me from the idea; could HSP cause something I eat / drink. However, I didn't care and I doing well today.

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  • Posted

    hi my 7 yr old daughter had this in march this year very bad dose of it too some docs said worse ever seen and still has lots of marks left now and had been really poorly in and off since like you i feel im getting fobbed off by my gps keep going they get paid to see you!

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    • Posted

      so sorry to hear about your daughter! i got seen on friday again at the docs they think my spleen is now inflammed but trying to fill be with antibiotics due to blood in urine but i havent been taking them becusee i know thats just what happens! when phoning for an app ask for an expereinced doc and hopefully they have some answers!x

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    • Posted

      oh no! i hope your daughter is ok! were the hospital able to give you any answers?! blood and protien in urine while having hsp is normal so that is why i declined the antibotics. Theres no point in taking something that isnt going to help and may not work in future if there really was an infection there

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