Could it be Behcet's Disease?

A

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
alex3619 said:
Interestingly as as a teenager I would have fit the clinical but not research definition of this. I had unending mouth ulcers - usually three or four at the same time. Something was clearly up with my immune system. However as an adult I do not fit this diagnosis. So the question arises: are there a spectrum of such disorders? Is ME one of the diseases on that spectrum? Bye, Alex
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Hi Alex,
justy
i have not the reference to hand but I am fairly sure frequent mouth ulcers is a symptom of EDS
WIll post it when i find it again - a few otheres are looking into that too.

ALso you mentioned in another post large hands and feet -well long limbs and tall stature and difficulty gaining weight you likely know can indicate Marfan's habitus - which my grandfather had. It is also strongly linked gebetically to EDS.

Not sure if you have these too - Ted Danson's build comes to mind as typical picture of it - but also many models and supermodels have it as that is the current fashion look.

best
Ally
 
merylg

merylg

Senior Member
Messages
841
Location
Sydney, NSW, Australia
@Kati no I haven't. Can be a long path to a diagnosis. There is such a thing as "incomplete Behcet's" plus it is still the subject of research especially Neurobehcet's.

What seems more important is not the name but that the patient gets listened to & gets to try available treatments that apply to their presenting symptoms.
 
E

erin

Senior Member
Messages
885
Very interesting thread. I am getting BD tests on Tuesday. I hope I don't have this illness.
 
wheretolook

wheretolook

Messages
10
Hi all,
I came across this thread. I am a Middle Eastrin guy. We have a lot of cases of BD and its tested when we have those sysmptoms.

I tested negative for HLA5, D27 by PCR.
I also tested for pathology test was negative.

But I am still facing like ME/CFS or HIV like virus.
 
Dmitri

Dmitri

Senior Member
Messages
219
Location
NYC
I was diagnosed with Behcet's earlier this week. The oral ulcers I get 5-10 times per year, usually one at a time, were a key part of it. It's a reason to celebrate after 20+ of years of not having a diagnosis.

I was prescribed otezla and am currently trying low doses with no discernible effects so far. The physician said that if it works, it will most likely only treat the skin/mucosal symptoms and not the neurological ones. Should this fail, what other medications can I expect next? I'm guessing IVIG would be very difficult to get approved for this.
 
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