I'm new to this forum but have been visiting for a while just to read posts on other experiences. I'm a 22 year old female and have been dealing with my "problems" for around 6 years now. It took me around 2 years to be referred to a rheumatologist and I'm currently seen at a bechets clinic as I do have a lot of the symptoms.
My symptoms are:
Ulcers (both mouth and I think genital)
Chronic migraines (seen by neurologist for this and is one of my diagnosis)
Artharalgia (also one of my diagnosis) - always having achey joints and swollen joints.
Abdominal pain and constipation
Pins and needles in limbs/limbs going dead
Pains in eyes and right temple (always in that area)
Red rashes ( been diagnosed with spontaneous urticaria also)
Change of colour in skin on face/sometimes can go a reddish colour but usually goes very pale ( over bridge of nose and on the tops of my cheeks)
Raynaurds has also been confirmed as a diagnosis.
Also under my chin gets extremely swollen like a moon face (this comes and goes)
I also have a vitamin D diffencey. Along with low folate and low vitamin B 12.
Vasculitis has also been confirmed as a diagnosis.
My mother also has bechets. When I first went to the clinic I was told they were 80% sure I had bechets. They have done numerous blood tests and nothing has shown. Think Iv now had every autoimmune test you could have and they've come back showing nothing. My symptoms are not getting any better and my consultant won't give me anything stronger then colchicine until she is 100% sure I have bechets however after 5 visits this year she then said she doesn't think I have bechets and basically doesn't know what's wrong. Because I'm a dancer and I danced since I was around 10 she tried to put my joint pain down to my dancing however I know that isn't the case. In the past two years Iv stopped dancing as my body just can't do it any more. I'm currently signed of sick from work as my tiredness and achey body makes it impossible to even complete daily tasks sometimes. My mum is adamant it's not bechets and is lupus however without any markers in my bloods the consultant won't listen.
I currently feel like I'm going to be discharged on my next visit and that no body wants to try and figure out what's going on with my body. I'm not really looking for answers just wondering what other people's experience was in getting diagnosed? How long did it take? Ect. I currently just want to be able to have a normal life and get myself back to uni
Thanks in advance for reading