Feeling frustrated with my diagnosis - Behçet's UK

Behçet's UK
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Feeling frustrated with my diagnosis


Hello, I'm having a hard time getting my diagnosis confirmed and I feel so frustrated. You see about a year ago I was given a diagnosis of Bechets from my dermatologist. I was having a bought of Sweet's syndrome at the time, which is a very painful skin condition that causes the body to attack the skin and create lesions.

I was very happy to finally get a diagnosis of something concrete because besides the Sweet's I've had many other health concerns that all point to an autoimmune condition. I feel pretty crummy a lot.

So being sent to a new rheumatologist again I was hoping for some validation and proper medication, or at least a plan of some sort. My hopes have been dashed yet again as the rheumatologist disregarded all my symptoms and basically told me nope I don't have bechet's.

I have been to so many dr.s over the past 15 years with zero idea of what I have. So they just blow me off. I feel like I'm really suffering from a lousy quality of life from the lack of support by my dr. She pretty much said I was not as sick as some people so I should be great full. I disagree but where I live (vancouver canada) I have a tough time getting a good dr. My last rheumatologist told me to lose 10 pounds before I came back to see him. I'm not even really overweight!

I do have a lot of symptoms that match up with bechets but not the hallmark mouth/vaginal sores.

I just wonder if anyone else has had a difficult time getting diagnosed and how they finally got diagnosed. I'm so tired of being shuffled around.

6 Replies

It took me about 8 years to get a diagnosis, and while that isn't terrible in the world of Behcet's, it was aggravating. This was worsened by the discovery that a gastroenterologist had noted the possibility of an autoimmune vasculitis, and specifically written in my notes that Behcet's should be considered...FIVE years before I was actually diagnosed. I knew what Behcet's was, after seeing it on a TV special, but didn't want to be "that" patient. I didn't have eye involvement, so I convinced myself I didn't have it.

I have a family history of Lupus, and other autoimmune disorders, so my doctors had me on low dose immunosuppresants as soon as I started having symptoms that were similar to Lupus. The odd thing was that my blood tests were always relatively normal, with the only exception being a low positive on my rheumatoid factor, and occasional signs of elevated inflammation in my blood work. So, after years of no answers, my doctors had told me to prepare for an eventual diagnosis of Lupus...only to eventually tell me that perhaps my issues were psychological. At this point I just decided I wasn't going to push it anymore. I knew I wasn't crazy, but I started to feel crazy.

That all changed in the unlikeliest of places...the dentist. After canceling several appointments for crucial dental work, he insisted that I come in so he could see my mouth sores. I think he was convinced I was exaggerating. When he saw them, he immediately told me that I needed to see an oral specialist, but also suggested that I take photos and show my rheumatologist. Despite not having eye involvement, my rheumatologist diagnosed me with Behcet's. (I would eventually develop eye involvement, and test positive for the gene mutation associated with Behcet's.)

What does this mean for you? Well, not everyone with Behcet's has the same symptoms, though most patients at some point will have mouth or genital ulcers. I've had both, though my main issue was always the oral ulcers. Even when those were under control, I had other systems that refused to behave. I mistakenly thought that having my ulcers meant my disease was under control. It wasn't. My entire GI track was seriously screwed up.

Behcet's is complicated because there is no blood test, and the symptoms mimic a lot of other disorders. Without oral ulcers you may not end up getting a diagnosis, since a lot of doctors really consider that the ultimate definition of Behcet's. The eye involvement is also a big contributing factor. A lot of my doctors refused to acknowledge my diagnosis, until I had uveitis. It was infuriating because I was hospitalized at the time, from complications of Behcet's, and doctors were still searching for other potential factors. It took a few days of a massive headache, and giant pupils, for them to send in the eye doctor...at which point everyone finally got on the same page.

Stay patient, and try not to be the patient that diagnosis themselves via Google and message boards, even ones like this where patients are sharing their personal stories. All you can do is create a binder with documentation of your various hospital days, doctors appointments, and what the potential diagnoses were at that point in time. I recommend putting it all in chronological order, but also using colored tabs to mark symptoms by body group. (Skin, eyes, GI, etc.) You will need to see a variety of specialists if it is Behcet's, not just a rheumatologist, and while the rheumatologist may be the one coordinating your care, he/she has no control over whether your other specialists agree. I've found that it helps to have the specialist who I see most often, refer me to the rheumatologist they prefer. This creates a better base because you've got two physicians that already know each other.

Just be open to the possibility that you may not be dealing with Behcet's. It's rare to have it without any ulcers, but obviously not impossible. I've fallen into a lot of rare categories within Behcet's, and it's infuriating to still not be believed...even after six months of chemotherapy to treat Behcet's specifically. (I've fallen into the black hole relating to neurological deficits despite not meeting the criteria for neurological Behcet's. Fun times over here!)

Be strong, be persistent, but also be patient. You know your body, and as long as you can attempt to treat the symptoms, you have time to make the diagnosis. Ultimately the symptom treatments may lead to a diagnosis as well, since various syndromes respond better to various courses of treatment.

If blisters in mouth are needed drink coffee and eat chocolate the day befor seeing the doctor, to have eye reactions eat cheese.

It works but my docs still don't want To know.

Keep food diary.

My son has been having ulcers in his mouth and private areas for about 6 years he also gets them all though is body he has had a number of scans and cameras and they have shown up he is in so much pain and now his legs are getting so bad most morning he can't walk and his legs have started to give way and he is so tired and I am finding it hard to help he is only 10 and has been so ill sends lots of time in and out of hospital the cramps in his stomach make him scream in pain he has a ring to sit on because of the pain from his ulcers

It is possible that you just don't eat the foods which trigger blisters. Keep a food diary.

Soda water and antacid tablets help . You have my heartfelt sympathy.. keep going, read the posts on this site. It can get better.

in reply to distanttree

Agree with all you say - I had mouth ulcers and genital ulcers, but found out somewhere that anti-inflammatories cause them. Stopped those and bingo! No genital ulcers. This was proved to be correct because my horse kicked me up the bum! I used arnica cream to bring out the bruising - which is a natural anti-inflammatory - and I had the worst genital ulcers in the memory of man. I now take Azathioprine because I had eye involvement. 12 months on and it is working. Rarely get mouth ulcers - no genital ulcers and no eye inflammation. Not solved it all, but the major ones for me anyway. Foods are a definite trigger.

Thanks for your reply,

I think the symptom folder is a great idea.

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