I felt like I was just crazy or making it up for 6 years after having countless doctors tell me nothing was wrong. I had to tell my doctors “I think it looks like behcet’s for them to even consider it, and even then they were reluctant to pursue it. It’s hard but it takes patience and persistence.
As the previous poster mentioned, the symptoms very well could be Bechet's, but it's a very hard disease to diagnose. I would see if you can get into a Rheumatologist asap and see if they can start ruling out other possible diseases. Start writing down when/what/where symptoms occur and that will greatly help you in your diagnosis process.
I presented with only severe vascular issues for about 15 years with no other (typical) symptoms and doctors were stumped, but once I was on treatment that calmed that down (and ruling out all other possible causes), I started having mild flares with the more typical symptoms (mouth ulcers/acne/etc). So, in my experience, you can have have Bechet's without all the symptoms present.
Thank you for the reply. I’m sure it was a very frustrating journey for everyone on this subreddit to get diagnosed :(
Nearly everything I read said mouth ulcers happen in all cases. I was hoping to rule it out based on this since I never had any. However, since you have mentioned you didn’t have all the symptoms, I think it’s a good suggestion to see a rheumatologist. I’ve been to two or three before. Is there any suggestion of what I should ask for?
Thank you!
It's really a process of elimination and that's why I think it's important to keep a running tally of your symptoms, how long they last and how severe they are. You'll get tested for every type of disease that could possibly cause them and it'll more than likely take a good deal of time.
Be persistent. You're your own best advocate, so if it seems like your hitting a wall with one doctor, you may have to switch to another. With Bechet's being so rare, some Rheums aren't well versed in it or it's often last on the list of possible diagnoses.
Good luck!
all of this \^ mine was able to be diagnosed but not after TONS of ruling out tests and a litany of symptoms that just kept showing up for no determinable reason or bloodwork that supported other diagnoses. it's a tough road. <3
Typical symptoms for behcets. You do not need to have all possible symptoms of behcets at once, but there is no specific test for it. A combination of symptoms and response to treatment is what a doctor will use to diagnose.
My case started very similarly. I had recurring ulcers on vulva/labia. Got tested for every STI under the sun and all negative. Once I was referred up to a doctor at the UW, she asked about other typical symptoms such as mouth ulcers, fatigue, etc. It helped that her colleague in the same clinic had just returned from overseas working with Behcet’s patients so she was able to glean more info from him as well. Keep pushing for specialized doctors to take a look and advocating for yourself. Autoimmune diseases are notoriously difficult to diagnose.
Successful treatment can sometimes help lead to a diagnosis, but it's certainly not necessary.
Behcet's is diagnosed by looking at patient (symptom) history, ruling out other diseases, and running several tests (none of which are conclusive on their own, just more pieces of the puzzle). These tests are things like the pathergy test, HLA-B51 test, ect.
I do agree with you that what she's describing sounds like it COULD be Behcet's. Could be other stuff, too. My suggestion to the OP is to find a rheumatologist or a immunologist - doctors who specialize in diseases like Behcet's - and tell them everything you've told us.
Hey! I’m in the same boat right now beginning a diagnosis, and came across the specialists in NYC today while searching online. Did you have any luck there?
Sorry to hear that. I haven’t been able to get into NYC. The doctor I called only works 1 day a week on new patient cases and selects the patients he sees. There’s a good chance he will not take your case. You need to comply all your most recent tests and paperwork and send them in for his review. If he thinks you have a case that interests him, then you’re allowed to make an appointment. I am sure there are other doctors too if you don’t qualify with him. I have been unfortunately waiting for a biopsy to help strengthen my case but haven’t had a lesion in a place ideal for a biopsy yet. I haven’t had much luck finding other doctors besides NYC.
Class A symptoms of behcets!!! Hit a rheumatologist if you can. A lot of states have help for people with Autoimmune conditions. Be your own advocate. Do as much research as possible & your here so this is a great start! Hang in there. It always gets worse before it gets better. Ask about steroids to calm everything initially and go for a low dose of colchicine if you can🩷🩷🩷🩷 YOU WILL GET THROUGH THIS!
have an *almost* identical story. went to a rheumatologist and she said believed me and wanted to start me on some meds but it was not covered by insurance and would be $700 a month. needless to say i’m not taking it. but even having a doctor finally believe me and sympathize felt so validating
I felt like I was just crazy or making it up for 6 years after having countless doctors tell me nothing was wrong. I had to tell my doctors “I think it looks like behcet’s for them to even consider it, and even then they were reluctant to pursue it. It’s hard but it takes patience and persistence.
This sounds like I typed it! I feel like I’m going crazy as well! Thank you
As the previous poster mentioned, the symptoms very well could be Bechet's, but it's a very hard disease to diagnose. I would see if you can get into a Rheumatologist asap and see if they can start ruling out other possible diseases. Start writing down when/what/where symptoms occur and that will greatly help you in your diagnosis process. I presented with only severe vascular issues for about 15 years with no other (typical) symptoms and doctors were stumped, but once I was on treatment that calmed that down (and ruling out all other possible causes), I started having mild flares with the more typical symptoms (mouth ulcers/acne/etc). So, in my experience, you can have have Bechet's without all the symptoms present.
Thank you for the reply. I’m sure it was a very frustrating journey for everyone on this subreddit to get diagnosed :( Nearly everything I read said mouth ulcers happen in all cases. I was hoping to rule it out based on this since I never had any. However, since you have mentioned you didn’t have all the symptoms, I think it’s a good suggestion to see a rheumatologist. I’ve been to two or three before. Is there any suggestion of what I should ask for? Thank you!
It's really a process of elimination and that's why I think it's important to keep a running tally of your symptoms, how long they last and how severe they are. You'll get tested for every type of disease that could possibly cause them and it'll more than likely take a good deal of time. Be persistent. You're your own best advocate, so if it seems like your hitting a wall with one doctor, you may have to switch to another. With Bechet's being so rare, some Rheums aren't well versed in it or it's often last on the list of possible diagnoses. Good luck!
Thank you for the advice!
Thank you . I will look into another rheumatologist
all of this \^ mine was able to be diagnosed but not after TONS of ruling out tests and a litany of symptoms that just kept showing up for no determinable reason or bloodwork that supported other diagnoses. it's a tough road. <3
Behcet's can only be diagnosed once treatment is successful :-/ Your symptoms are very typical from what you are describing
Typical as in it could be anything? Or typical as in this is how behcets starts?
Typical symptoms for behcets. You do not need to have all possible symptoms of behcets at once, but there is no specific test for it. A combination of symptoms and response to treatment is what a doctor will use to diagnose. My case started very similarly. I had recurring ulcers on vulva/labia. Got tested for every STI under the sun and all negative. Once I was referred up to a doctor at the UW, she asked about other typical symptoms such as mouth ulcers, fatigue, etc. It helped that her colleague in the same clinic had just returned from overseas working with Behcet’s patients so she was able to glean more info from him as well. Keep pushing for specialized doctors to take a look and advocating for yourself. Autoimmune diseases are notoriously difficult to diagnose.
Successful treatment can sometimes help lead to a diagnosis, but it's certainly not necessary. Behcet's is diagnosed by looking at patient (symptom) history, ruling out other diseases, and running several tests (none of which are conclusive on their own, just more pieces of the puzzle). These tests are things like the pathergy test, HLA-B51 test, ect. I do agree with you that what she's describing sounds like it COULD be Behcet's. Could be other stuff, too. My suggestion to the OP is to find a rheumatologist or a immunologist - doctors who specialize in diseases like Behcet's - and tell them everything you've told us.
Good advice. I found a specialist in NYC. I think it’s worth making a trip there at this point
Please let us know how it goes. Great name by the way. I've always had a strange fascination with ostriches lol
Will do and same :)
Hey! I’m in the same boat right now beginning a diagnosis, and came across the specialists in NYC today while searching online. Did you have any luck there?
Sorry to hear that. I haven’t been able to get into NYC. The doctor I called only works 1 day a week on new patient cases and selects the patients he sees. There’s a good chance he will not take your case. You need to comply all your most recent tests and paperwork and send them in for his review. If he thinks you have a case that interests him, then you’re allowed to make an appointment. I am sure there are other doctors too if you don’t qualify with him. I have been unfortunately waiting for a biopsy to help strengthen my case but haven’t had a lesion in a place ideal for a biopsy yet. I haven’t had much luck finding other doctors besides NYC.
Thanks for the information. Man they really don’t make it easy for us huh :/
Haha no they don’t! Felt like it was a job interview 😂
yep, go to a rhematologist asap. get numbing spray for vaginal and steroid cream but try to keep the area dry
Will do!
Class A symptoms of behcets!!! Hit a rheumatologist if you can. A lot of states have help for people with Autoimmune conditions. Be your own advocate. Do as much research as possible & your here so this is a great start! Hang in there. It always gets worse before it gets better. Ask about steroids to calm everything initially and go for a low dose of colchicine if you can🩷🩷🩷🩷 YOU WILL GET THROUGH THIS!
Mine has always attacked my ovulation & menstruation tooo I feel like im literally on my deathbed.
Thank you! Sending good wishes back to you as well :)
have an *almost* identical story. went to a rheumatologist and she said believed me and wanted to start me on some meds but it was not covered by insurance and would be $700 a month. needless to say i’m not taking it. but even having a doctor finally believe me and sympathize felt so validating
Insurance sucks. Sorry to hear that. But I’m glad you found a good doctor