I am not sure where I stand with this but I got misdiagnosed with microscopic polyangiitis. I have bronchiectasis and 3 months ago due to a blood test which should have been done in the first place i got told i have mild alpha-1-antitrypsin, I am 39.
The problem is due to the diagnosis I was put on a high dose of mycophenolate (1000mg) and prednisolone (30mg) which I took for 18 months. The other issue is that I had appointments cancelled by the hospital (found out from my GP, the consultant had retired) and did not see a consultant for 6 months. When I asked about seeing someone the answer was not until we employ someone!!! Due to this I was told I was not fit to fly and lost my job of which I had only been there 6 months.
Over those 18 months I have never felt so ill with the drugs, it has truly wiped those months from my life. I have slept the best part of 2-3 hours a night whilst trying to be a father to 3 children, husband to my wife and hold a job down.
Since coming off the drugs I am different guy and being treated appropriately, I feel normal again. I currently have a Fostair pump which I don't need to take everyday.
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BilboBagshot
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Proving medical negligence can be difficult, the test is that your Consultant did something that the majority of Dr's in that situation wouldn't have done.
Have you requested a copy of your hospital notes and spoken to PALS ( patient liaison )? That's a good starting point.
There is also a Patient Safety Charity called AVMA that operate an advice line.
Unfortunately with our illness it is hard to diagnose and i think we were all misdiagnosed in the early years. I was given loads of different medications for nearly 6 months before i was lucky enough for them to find the answer after having to be admitted to hospital.
I would never dream of making a claim as i am so grateful for all the NHS has done and is still doing for me.
Hi proving medical negligence is very difficult i no i have been through it and after 3 yrs i got nothing and i had some of the best people working for me, it wasnt the NHS i put a claim in against, it was the Doctor who for no reason stopped the medication when everything was in remission. I have WG and after 20yrs i was taken off my medication no follow up blood tests and after 18mths was rushed in hospital and had to start all over again but this time i have lots more things wrong caused by the flare of WG.
I'm sorry to hear that you had a flare up. My Mum's Dr won't take her off her existing drugs regime as she has been healthy while taking pred and Co trimoxisole antibiotic. He said that 5mg of predicted was less of a risk then another flare, good advice by the sound of it?
Your Dr is so right not to take your mum off the Prednisolone, they have side effects but prevention is much better than a flare up as that can leave you with a lot more than what you are already suffering with Hope your mum keeps well and if you do decide to put a claim in i wish you good luck.
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