I am desperate for advice . I have been having a growing list of symptoms and illnesses over the last 11 years . I began with massive hormone swings and endometriosis which meant a full hysterectomy four years ago.
I have been having mouth and dental issues with ulcers turning into infections in my whole face only healed by antibiotics and massive facial and neck pain which the doctor finally put down to trigeminal neuralgia and has caused me to have teeth extracted from the pain , but the ulcers and abscesses still happen and have spread to my tongue and throat, this begins a flare up of other conditions in my body that do not slow down until I have a long course of antibiotics and antifungals which I have to fight to get from my GP.
I was referred to a rheumatologist , 14 months ago after a flare up which included
Ulcers throughout mouth
Thrush in mouth, genitals and candida throughout body
Infected follicles , given fucidin, spots that do not heal on lower legs and arms
Throbbing pain in my head, neck and ankles, wrists and joints
Throbbing veins and hot pain in upper thighs and genitals, with small blueish veins coming up that were painful
Blurred vision, dry ,itchy eyes, pain behind eyes, bloodshot eyes intermittently, floating spots
Fatigue, night sweats, stiffness, tight chest, pain under armpits
I had already been diagnosed with IBS and stomach acid issues, bloating and constipation.
The rheumatologist referred me to opthalmology and ENT as possible Sjorgrens or Behcets but then discharged me from their list because the waiting list was so long for appointments and told me to be re referred if there were any results.
I finally saw opthalmology last week , and despite being in a mainly quiet phase they found mild uveitis in my eyes and have put me on lots of drops and believe Behcets is more likely, I am now more concerned about getting a final diagnosis because as an artist I cannot afford to have this quickly growing issue with my eyes,
I will see ENT next week, but obviously, as I am in a quiet phase I am concerned that yet again I will be pushed aside.
Oh, and I regularly suffer brain fog and tingling or numbness in my fingers and occasional loss of coordination.
Please , could you advice me if you think I am as the opthalmologist said " test case Behcets"?
Could you advice me of what I should ask the ENT in terms of more tests required?
Should I be referred back to rheumatology or nuerology?
What other help or tests should I ask my GP for, they are not supportive, never look at all the conditions as a whole to try and work out a diagnosis and no nothing about Behcets, Sjorgrens or bother to consider autoimmune issues as a possibility?
I just want a diagnosis as soon as possible now, so I can get on a medical regime that could slow down the effect on my body, especially my eyes, I am scared of the idea of going blind because of lack of prevention more than anything else. If anyone can advice me about whom to speak to , or what questions I should ask or medications I can ask about I would be so grateful.
I try to keep fit when I can, take exercise and eat well there is nothing more that I can do until I can get proper medical help.
When they have done tests they ruled out RA, lupus, Lyme's, mono and the other usual suspects and the only change in my bloods is a higher than normal white blood count.
Any advice will be appreciated and I wish everyone on the forum more luck than I with their illness and medical support