Best wishes of results to you and your family
Member has chosen to not make this information public.
Member not yet following any Groups.
Member not yet following any Pages.
Sounds like a very familiar story, as far as nothing showing up despite numerous tests being done. (although I am not sure what ANA stands for) this exact or very similar circumstance has been repeated in my situation several times. Often it just ended by being referred to yet another neurologist, who’s (despite a vast variety of different symptoms including fever, headache, feeling that your skin is falling off, etc. etc. etc.) first and only question was to do with dealing with “The Headache”. Which was never close to being cured although repetitively often only being the thing that was even attempted to be treated.
The tests that you have listed seem to never show a result, and one time a doctor actually said well technically it does not seem you are sick during one visit. (Although of course he was making a point) it was obvious that the patient was sick but nothing showed up in any test that was performed.
Another famous conversation was when we asked why it is impossible to get the full medical records printed off for patients, and the reply was well in this case you would need a truck to carry it all.
Although I realize that this information is not directly helpful to you, my point is there must be some tests that is being overlooked in this case, if not overlooked then perhaps a test that is not approved it would seem perhaps in North America( as the case that I am referring to is in Canada ) at least, but would be approved in a different jurisdiction that would yield some type a better result.
Another unfortunate part is, that even 15 or more years down the road there are still occasional arguments/Disagreements between doctors over the actual diagnosis of Behcets Syndrome.
It sounds like you’re well into it, I thought maybe you were new to the situation. It’s a long haul for sure. Doctors in general don’t know much about it for sure. Glad your daughter has been able to get back on track, to a certain amount. Having a strong spirit and not giving in can go along way with this.
Tough deal for your daughter. I know someone with that disease, complicated by a combination with another equally rare and more difficult disease.
I wish I could tell you there’s a simple answer, there’s not though.
It’s truly a systemic disease and many of the treatments given are more for pain management. There are some steroids that are sometimes used.
Prednisone colchicine Topomax Toridol, are some of the prescriptions involved in the past. Remicade was also considered but not attempted. (very expensive and again the treatments can sometimes be worse than the disease) I’m not an expert on any of them, and like you’ll likely hear that effectiveness will vary on each individual. Some of those are pain management.
( What I’m going to say next is not meant to sound like a horror story I’m just being honest, and I hope it will be taken in the way I intend it, although it’s hard to express in text)
Accept the fact it is incurable, don’t go to a doctor thinking this one will cure, there is no cure.
Don’t have a false hope that this doctor will “do it” the up and down emotional ride from that can be the hardest part, for the supporters of the affected, and the affected.
Some symptoms can be controlled/or minimized. You will likely see Neurologists and possibly Dermatologists, and Rheumatologists, one we saw was considered a local expert because he gave a speech on it once as part of a Paper he delivered to his peers.
Your area may have doctors with more familiarity than this area, you may need to explain to doctors what it is if you need to ie go to Emergency Room.
It’s not fun to watch someone go through a bout of this. In major flare ups it can last days or weeks, but it will pass, and things will return to normal in between flare ups.
I wish you and your daughter all the best it’s not a death sentence! It is life altering, but a reasonably normal life can be expected. Inform yourself when you can.
It’s hard to explain it all in text, but it’s ok to contact me if you wish. If you post here with my username I apparently get notified.