Behcet's and me!

Hi Everyone

I'm new to this forum and really glad I've found it, it's been reassuring to read some of the issues everyone has been facing (I didn't know how to best phrase that so I hope you understand my meaning!)

I've had Behcet's from around 11 years old, to the age of 29 currently, and have found it mainly effects my eyes with some fairly severe scaring in my left eye and light scaring on my right, but it has also effected other areas, like my white blood cells causing a fit/seizure (luckily just the one), and even inflamation in my ear canal causing real sensitivity to noise.

I really sympathise with those of you on here, but especially those that have children going through the disease at the moment, as I found it difficult to cope with growing up with the side effects of both prednisilone and ciclosporin.

I'm at a stage now where the condition seems to be under control (touch wood), with a good regime of tablets and infliximab. But for some time now I've been feeling this "brain fog" (I've seen it referred to on here as this and it sums it up amazingly!). Does this get better? I'm functioning ok but really feel a lot less sharp than I once was, and find articulating (it took me a good 30 seconds to think of articulating then!) myself in the way I want to difficult sometimes, as the words escape me.

As I start to think of the next stages in my life, I've been fortunate enough to not have the carrier gene, but am worried about the future with the unpredictability of the disease, and having another bad attack on my eyes deeming me severely partially sighted. My question is have you found there's a stage in your life where the disease has relented, does it happen? I've read somewhere that it can also go away completely, which would be amazing, but I am sceptical.

I've also found that no matter how much sleep I have, exercise I do, and well I eat that I'm always a bit lethargic, does anyone else find that?

Thanks

Joe

10 Replies

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  • Hi Joe and welcome to the site. I'm sure you'll get many replies, tips and advice.

    I have suffered with BD for over 30 years now and I find the knowledge, medical staff, and research has improved so much. In answer to one of your questions.....I find that as time goes by my symptoms have lessened and are much less severe. At the onset I had it really rough with many nonstop symptoms and being passed from pillar to post. Then after 15 years I found a good doctor who had experience of BD and once on the right meds slowly improved. During this time I managed to have two more children and do some part time work on and off, so life does go on.

    My children are grown and I'm retired, but I still try to get the best out of life even though I have plenty of aches and pains.

    Hope this helps

    Billi

  • Hey Billi

    And thanks so much for your response, it's reassuring to know your symptoms have lessened, and does give me hope! As well as being able to manage the disease (with the consultants et al) to mean you're able to enjoy life.

    It's helped a lot.

    Thank you

    Joe

  • Oops!!!!

    Having a Senior moment. Yes as you now witness I too have the brain fog. It comes and goes it is probably partly due to the disease and also the meds we take and in my circumstance AGE....lol

    Billi

  • Sorry, may I ask which "next life stages" are you referring to? 40s? 50s? Thank you.

  • of course, in the imminent future I meant the phase of having children, but also as I move from 30's to 40's and on wards.

    Thanks

    Joe

  • Thank you. It might be better to address your "brain fog" with your consultant, especially if there's CNS involvement. Wishing you and the Family well.

  • Thanks, what is CNS?

    I've spoken to them and they've said it's part of the condition, but they used a double negative to explain that it isn't un-repairable, which didn't help given the fog (I took that to mean it is repairable!).

    I'm still functioning ok, and go to work etc but I'm concerned it could dip further, causing a real impact on my performance, especially at work.

    Joe

  • Quite understandable. CNS = central nervous system.

    I often wondered if biologics might cause issues on blood vessels as well as the disease process itself. Another reason why I am slightly cautious given my not so great vessels. Take care and thank you for sharing.

  • There is hope. I suspect I have had Behcets from a very young age. It kicked into gear in my early 20s. My pattern has been increasingly worse as my age progresses, which is somewhat contrary to others I think. However, between the bad times, I have been in good shape. Mental acuity has fallen with this last bout but I am nearly unfogged and hope that with time most of it comes back. Slowly I find I am improving more and more and hope for no more flares. Keep up hope!!! Keep fighting.

    Also CNS = Central Nervous System .

  • Great, thanks both for your input : )

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