Frustrated

I was just diagnosed with Bechets in August...does this coincide with Hashimotos,Reynauds,Fibromyalgia,Rosacea,endometriosis,and neuropathy. Also does Agent Orange have anything to do with this. My father did 3 did tours in Vietnam during that time. No one in my family has the Bechets diagnosis. I'm curious because I am also the mom of a 17 year old son on the spectrum,epileptic and developmentally delayed.

Signed

Frustrated

10 Replies

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  • Hi and I'm afraid nobody knows everything about Behcets. My journey with this disease started over 30 years ago and it took me 10years before a doctor mentioned it. Back then there was so little information. Like you I and even the doctors wondered if it was something I had caught living in the Middle East and Africa. Now there is much more info, research, medications and doctors who specialise in this disease. I understand how you feel and searching for an answer but at this time there isn't one. We all come from different countries, different races, and have different symptoms and still nobody can find WHY. So my advice to you is to learn to accept this , stay strong and positive and get on with your life as much as you can. You will have bad days and also good days. This probably isn't what you wanted to hear but it is the truth of it. Take care and I wish you the best.

    Billi

  • Thank you Billi...one day at a time for me...colchicine neurontin and methocarbomol working really well...can't do steroids due to Hashimotos...hoping to have some more information next week 😑

  • Yes I don't think anyone can be certain about origin but the best they understand at the moment is it is just a genetic misfortune. But I do think it occurs in families with an 'auto immune profile' as I think of it. There are lots of auto immune issues in my family but no contact with anything like agent orange. X

  • Thank you...it just sux because I have gotten hit with all of this in a matter of months and it can be so painful on certain days 😑

  • I know. It is a hard life with this disease. We all struggle with it. It is hard to accept and we want answers but sometimes there aren't any easy answers for us. X

  • I appreciate your kind words I am learning to deal all I can do is manage my symptoms and try to avoid any stress...best wishes to you ☺

  • HI Tretre1229 are you in the UK? Have a look through our website here: behcetsdisease.org.uk I haven't read about any links to agent orange. Any further questions please email info@behcetsdisease.org.uk

    Warm wishes to you.

  • Thank you...wish I was in the UK...IN the states...warm wishes to you as well

  • behcets.com Do contact ABDA - American Behcet's Disease Association. Good luck to you.

  • Great idea. And also, do look at the help groups on facebook. There is one called Behcets Disease You Are Not Alone. Great people on there from US and us Brits and everywhere else in between. We all share tips for coping and sympathy and it is a great community. X