Author Topic: Periodic Fever Syndrome  (Read 4623 times)

molfekk

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  • Posts: 5
  • Reason for joining: Patient diagnosed with a periodic fever syndrome
  • Diagnosed: Thursday 25th February 2016
Periodic Fever Syndrome
« on: May 04, 2016, 09:42:25 pm »
Hi everyone,
I have recently been diagnosed with an non-specific periodic fever syndrome. At the end of 2014 I was first admitted to the Royal Victoria Hospital (Belfast, Northern Ireland) with symptoms that showed up as suspected meningitis- very high temperature, stiff neck, crazy heart rate and my white cell count was through the roof. After lumbar punctures it was made clear that I didn't have meningitis. I was in and out of hospital on several occasions over a period of 4 months. Each attack seemed to have lasted between 4 and 5 days and then I began to return back to normal. I had every test done under the sun but they were still unable to get to the bottom of things. By this stage I was spoke about at many meetings and I was quite literally a conundrum.  Thankfully, Dr Hedderwick, my very thorough consultant here in Belfast was able to dig even deeper and somehow had a look into periodic fever syndromes. I was then referred over to the National Amyloidosis centre in The Royal Free in Hampstead where I met Dr Lachmann and I was given the diagnosis.
In between each attack I am a fit and healthy teenager and don't let it hold me back in any shape or form. I just get tired from time to time but then again don't we all.
I know that these 'syndromes' are very rare but I was just wondering whether there are many people on here suffering from a periodic fever themselves, and if so, which one?
I'm a 19 year old girl who is new to this whole thing so it would be nice to be able to chat to someone else who is on the same boat as me as google can only tell you so much.
Thanks,
Molly Fekkes

RACC-UK

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  • Posts: 2
  • Reason for joining: Recently created a Facebook patient support group as well as being a patient
  • Diagnosed: Hyper IGD Syndrome/ MKD
Re: Periodic Fever Syndrome
« Reply #1 on: March 22, 2017, 02:40:12 pm »
Hello Molly,

I have just created a new patient support group if you're on Facebook and would like to join in a discussion with other UK patients? We are called 'Rare Autoinflammatory Conditions Community' or RACC-UK for short. We have a general open page and a closed group. Head over to us and wait for an approval then you can introduce yourselves.