Behcet's Syndrome Society
4,022 members3,409 posts

Undiagnosed...& new here!

Just wanted to say hello. Been sick a long time with chronic fatigue, fibromyalgia, multiple chemical allergies & sensitivities, seronegative spondyloarthropathy. Was able to work full-time til Feb 2011...but had no life outside slept a lot to regain energy.

2010 really was struggling at work with general muscle weakness, poor concentration, cervical spine pain, chemical sensitivity & migraine headaches.

Rheumy's at first thought I had Psoriatic arthritis. It's still possible, as is Lupus, Familial Mediterranean Fever, Enteropathic arthritis, Hypersensitivity arthritis, Behcet's Disease etc.

I had never heard of Behcet's until I sent my saliva off to 23andMe in desperation for some clues to a diagnosis. I had 3 snps that gave increased risk for Behcet's, although only one is European. So then I was able to raise it as a possibility & get my various specialists at least thinking about it. So far no conclusions, & Rheumy has finished seeing me!

Immuno/Allergist has also finished seeing me! Gastroent. is still helping me.

I also got myself a referral from a 2nd Neurologist ($$$) to see a public hospital Neurogeneticist (Mitochondrial Diseases Professor) to explore possible mtochondrial myopathy etc. She is running her workup.

In terms of ?Behcet's: I had mouth ulcers from teenage years, but not recently. I don't get genital ulcers, but have had some reddish nodules & am generally prone to folliculitis & a trial of Arava caused me to get a huge painful boil in my armpit.

I had severe teenage skin problems, that later tracked down each side of my neck. Have been left with scars. Used to get painful nodules, sometimes near eyebrows. Also had as an adult, large painful red itchy, oozing nodules on my upper back, which I would scratch. They would seem to get infected, crust over & eventually heal leaving scars. After an elimination diet discovered that if I stopped drinking coffee, the sores disappeared never to return!!! (This is the single most best thing that seeing my Immunologist/Allergist & dietitians did for me)

I also have chronic sinusitis & chronic nasal septal ulcers that will not heal, in spite of treatment. Chlorsig. no help & toxic. Bactroban helps but only temporarily, & is also quite toxic. Even had silicone dressings stitched into place by an ENT, but the dressings fell off. (Nothing like seeing a curved needle going through your nasal septum, whilst local anaesthetic is dripping down your throat!!!)

I've also had a stomach ulcer & atrophic gastritis (H. pylori Neg) and am prone to an oesophagitis, that can be triggered just from breathing some chemical like plastic car interior.

I get Lupus-like reactions to drugs eg Plaquenil, Clexane.

Recently I developed profound weakness & a couple of weeks later, serositis/peritonitis-like episode where abdomen swelled, bloated & was tender. This developed after having a routine colonic motility nuclear med scan, that followed a routine gastric motility nuclear med scan. So now they are also thinking about Familial Med Fever.

I'm also looking into Connective Tissue Disorders like Marfan, Loeys-Dietz & Ehlers-Danlos but so far cannot afford genetic testing & hospital (so far) will not help....but maybe Mito Clinic may help.

My Immuno. does think I do have a Connective Tissue Disorder "but which one?" ...then he dropped me. I guess they all realise the Mito Professor is doing her bit now.

I've also got a referral to another Immunologist...sigh..a Professor this time...who also has expertise in Rheumatology, Opthalmology & an interest/expertise in Behcet's.

Thanks for taking time to read my story! Lucky I'm a scientist with an interest in working out puzzles!!! I'm now bedridden a lot & fearing getting clots from inactivity. Oh forgot to say have had one seizure (1 min tonic/clonic) when had pneumonia & high temp. Had a lot of migraines when working, not so many now. Lately have had some swelling & tenderness in foot joint (like gout or Lupus or RA), also had warmth in elbow joints & low grade feverishness without temp. Get cold extremities. Had one episode Raynaud's. Holistic dentist reckons I have systemic Raynaud's...he's very perceptive (more so than my Drs).

4 Replies

Wow, that sounds amazing. You will be the most tested person on this site.

Where are you from, AusBehcets makes me think you may be Australian.

I hope you get a diagnosis soon. I think when you know what you are dealing with it becomes a bit easier.

Keep us up to date



Sydney, Australia


I am also from sydney, Australia and there is another lady that I have been talking with who is also from about 3hrs outside Sydney.

May I ask which hospital you are attending?



I have sent you a Private Message. It's great there are some Sydneysiders here!


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