bechets disease

[live4fitness713]

Anyone have this disease? How did they diagnose you?

How are they treating you? Do you have to take steriods? If so just when it is active or always? Do you workout and if so have you noticed it takes longer for the soreness to go away?

I am trying to get diagnosed- I have a great Dr. and he wants to wait for my next breakout and take a biopsy to make 100% certain.

Thank you for any help!!!!!!!

[Kaushr]

Hi....I m a mother too.....and was diagnosed with Bechet's  some four years back....I know all the problem as I have experienced them......you can talk to me here about the same.....fortunately my problem was only related to strange ulcers.....for which I seek tropical steroids here in the UK......no regular medication.......just when symptoms come.......

[iamamother]

lol oh my full addy didnt come up,  well u have my email name n just add the yahoo thingy at the end. Thats my email addy
regards

[iamamother]

Hello live,
I wish i can contact some Behcets patients, but i dont know where and how to find and contact them. My email address is  noreen_bilgrami***@****,  I am writing this so tht anyone who is suffering from Behcets can write to me, either to share his or her experience or need any support of info from here in Australia.
Thanx for ur help  
regards

[live4fitness713]

I am so sorry I have written in a long time and given an update.

I was diaqnosed back in April. I didn't need to get a biopsy- thank goodness :) I did spend mothers day weekend in the hospital- was there for 5 days- due to this disease. I am on immune suppressants right now and doing ok. I am unable to work out but I am doing a "Qi-gong" video and it seems to be helping. ( it is like ti-chi)


"iamamother"  Your sons symptoms sound like some other Behcet's I have communicated with. Yahoo has a good information board. I don't know if I can say that or not - I would hope Medhelp wouldn't mind since this is such a rare disease and finding anything on it is so hard!

[iamamother]

My son was diagnosed of Behcets Syndrome or Desease after being tested in about 10 days. Mostly it was with the method of eradication and studying his symptoms. He had all the symptoms as described in BD. He is by the grace of God doing much better. Last September he had the infection effect his spinal cord which paralysed him chest down. he is now walking and is in amuch better shape.He does physios and keeps himself very motivated. But his urine n bowels still need help. He has to self cath himself  for relieving his bladder every 3 to 4 hour  and take enemas for bowel relief in the mornings. His strength is up n down each day, specially in the evenings. He sometimes gets a few mouth ulcers but when he gets his Infliximab infusion(after each 6 to 8 weeks) he is so strong n happy. I wonder if u know anyone who has had such an experience or any specialist who can tell me more. May God keep u safe, u just fight back and never give up. U can beat it......... love n hugz  a mother

[snogginwithyou]

if its any cosulation im working on my doctor who thinks im making up my very random symtoms. the very best suggestion i can give is to go to your doctor and ask about Bechet's Disease straight up. its what i did and ask for an executive physical for males: you get pretty much everything tested.
check out  http://www.behcets.com/site/

[Wiggy26]

Hi im just waiting to see a dermotolgoist waiting to be diagonised ! i have had Rhumatoid Arthritis for 9 years and am now showing other signs of the disease, im  not sure how long the process takes, I have steroid injections for my RA, but have just had a short course of oral steriods to try and keep things in control, i do not work out due to RA, sorry cant be of more help, as still waiting like you, i do take immune suppressents and methroxtate for my RA which has probly helped keep the problems at bay for a while