Is it or not

[Floppy99]

Honestly nearly 25 yrs of issues. Passed as Fibro, last few years I have questioned this as Im not Atypical of fibro. I paid last year for a private zoom Rheumatologist appointment and she was the first one to request full bloods incl all auto immunes etc. Anyway because of the diabolical NHS system my results didnt get back to the consultant and the results didnt show on my health log in. After another error because GP doesnt understand any of this requested NHS Rheu to look at results and they said they were fine. In error I had a positive HLAB27 which it wasnt its a negative the HLAB51 is positive and NHS rheumatologist said its fine. Ive just found this out today. I am not happy.

Last year my head and neck became a real issue the pressure and the pains. I was told it was sinitus/ear pressure etc. My BP was over 160. I was taking reflux treatment as this was a sudden issue and I had been suffering with this for a couple of years. Anyway I am on BP meds and Duloxetine as my mood drops were horrific.

Overall my hips and neck feel tender. My head is not right. I have mini shocks. horrific nightmares, sweats, anal fissues, dry eyes (had pressures checked under NHS for a while) terrible throat dryness (not mouth) drops of fatigue where I can recover - bouts and flares. Tightness in chest. Low VitD (GP not concerned but I take supps) Had had IBS but I manage this well. PEMS - post workout malaise, nausea etc.

I have battled with GP about these for a while. Being passed as Fibro. Two average poor rheumatologists at a loss handing me out Fibro leaflet. I am not in pain! Fibro is all over pain. Anyway I have emailed the private Rheumy back and await her thoughts. Note that I do not get any mouth ulcers odd few throughout the year (my older brother does). So is it possible to get a diagnose on this without the intense ulcers I wonder.

Also my general health is excellent (2 stone overweight). As a family we show no weakness and are extremely well.

Sorry so long but the frustration is now bothering me!

[red_wine]

Sorry to hear what your going through. It does sound auto immune related and the presence B51 is a useful indicator, but I believe the criteria for an official diagnosis for BD is quite specific. Patients must have recurrent oral ulcerations (apthous or herpetiform) at least three times in one year and any two of the following:- Recurrent genital ulcerations

- Eye lesions (uveitis or retinal vasculitis) observed by an opthalmologist

- Skin lesions (erythema nodosum, pseudofolliculitis, papulopustular lesions, acneiform nodules) found in adult patients not being treated with corticosteroids

- Positive "pathergy test" read by a physician within 24-48 hours of testing

As a side note, be weary of head & neck pain! My BD problems started with a persistent headache and stiff neck. My GP said it was tension headache caused by stress and prescribed antidepressants. Within a few weeks I lost all appetite, I couldn't move without vomiting and ended up in A&E with a blood clot in my brain.