Behcet's group?

hi i am new here, so pls forgive the ignorance... i hv not been able to find a group for Behcet's Syndrome... wondering if anyone here knows? thx !

[aleyce]

Hey, I don't know if you are still waiting for an answer or not but I would like to know the same thing.  I was just diagnosed with this today and would like to find others going through it.  Have you had any luck?

[kmil1999]

The Rare diseases forum lists Behcet's.  I don't know how active people are on that site though.  Good luck!!  Karen

[kmil1999]

don't know why the one was blanked out.  It was only "daily strength "  all one word.

[aleyce]

Thank you so so much that is very helpful.  Do you have this also?

[kmil1999]

I have some sort of auto-immune thing going on, but the doctors are not sure what yet.  I was just trying to help everyone out.  Behcets has been mentioned a lot lately, and no one was getting any answers.  I definitely know what it is like feeling horrible and not knowing what to do about it.  Karen

[spunkykitty]

sorry i've not been back for awhile... thx for the input... will check it out...

[aleyce]

I have not been here since last post.  I just read your comment, thanks for your response...I know this is crazy....I feel crazy.  Sometimes I feel like I am just imagining these symptoms until they get out of hand.  I just want a diagnosis so I can feel better or know what to expect.  I wish you well.

[iamamother]

My son was diagnosed of behcets last year 20th Sept. He had  near death exp with the disease infecting his spinal cord...... he is now much much better and safe. i would love to share our exp with anyone if it helps... however I dont know what will happen nxt, but for now I know he is no more paralysed, he is walking sometimes with his cane, but he still doesnt have any sensations for baldder relief and bowel relief, he does it all himself.
BUt as his immunologist says, dont wrry, he wont die of Behcets for sure ( AMin)

[iamamother]

I wanted to further explain, he is walking by himself now, but sometimes by evening he takes his walking stick. He doesnt use his whellie any more, also i want to tell u he is graded as a quadripulic (dunno how to spell it), because he had no feelings chest down for abt  5 months as the disease struck his spinal cord last year.

[iamamother]

WHow are u and wht r ur symptoms. I am in Australia........ my son had Behcets and is gradually coming out of it. Maybe we can help each other......... or just share a big warm hug. The doctors helped save his life as his episode was very aggressive. It seems that r in control of the disease

[kmgore]

Hi- I know you from the yahoo support group.

How are you doing? How is your son doing?

Take care!