Discussions By Condition: Rare Disases

Multicentric Reticulohistiocytosis

Posted In: Rare Disases 2 Replies
  • Posted By: sarasmom4
  • January 12, 2008
  • 10:02 PM

Hi,
New here and was wondering if anyone had heard of this rare disease.
It's a long shot but I would really be interested in speaking with someone who has had first hand experience with this. I've only spoken with two doctors that have ever seen another patient with MRH, so looking forward to any info.
Thank you,
Sarasmom4

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2 Replies:

  • Hi, I was diagnosed with MR in 1998, apparantley at that time i was the worst known case and they did not expect me to live,but here we are in 2008 and i'm still here, positive thinking and perseverance are the major factors in dealing with this disease, it is hard work but well worth the end reward. I have been left with disfiguring arthritis but I am still here to deal with it. If you have any questions, I will be happy to answer them if I can you can contact me at my email address correnza@aapt.net.au Good luck and keep fighting
    Anonymous 42789 Replies Flag this Response
  • Hi,New here and was wondering if anyone had heard of this rare disease.It's a long shot but I would really be interested in speaking with someone who has had first hand experience with this. I've only spoken with two doctors that have ever seen another patient with MRH, so looking forward to any info. Thank you,Sarasmom4 Hi there. I have only just discovered this forum or I would have replied much sooner. I hope things are going well for you. My partner was diagnosed with this terrible disease 3 years ago and has tried pretty much every treatment available with little success. Since it is so rare it is hard to find other people who suffer with it so we are more than happy to keep in touch and share our experiences. Doctors in America seem to know more than they do here in Australia and I can pass on a couple of name if you like. You can contact us at lizhall001@gmail.com
    computerkat 1 Replies
    • August 20, 2009
    • 01:46 AM
    • 0
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