First, some background: Rheumatology instructed me to stop daily hydroxy 400mg last feb when blood tests prior to starting IV osteoporosis treatment found hypogammaglobulinaemia & leukopenia....nb for years before starting on oral immunosuppression, my gammaglobulins, complements, haematocrit & white blood cells had tested chronically low.
Anyway, in feb, rheumatology referred me to immunology directly for investigations. Meanwhile I've been allowed to continue on 1000mg myco cellcept daily. Also I'm continuing to use the typical assortment of prescription oral & topical meds in my multisystem treatment plans. Thank goodness
As a result of those Feb blood results & my history of infections, Rheumatology suspects I have a primary immunodeficiency with infant onset SLE, sjogrens etc etc as secondaries. Am expecting immunology's initial report to arrive any day now, but the specialist immunology nurse has phoned to warn me it's been written and confirms that treatment is required.
Now am prepping for a rheumatology appt at the end of June + my 2nd immunology appt in early July...which is why I'm asking this question here
A lifetime of persistent, reocurring infections is key to rheumatology's immunology referral. But, most of my life, a set of disabling progressive neuro cerebral symptoms have been just as persistent. I could list these NC symptoms, but this question is to ask whether others on forum experience an extra degree of severity of NC &/or vascular symptoms affecting one side of the body. All my symptoms, generally, always have & still do affect both sides of my body, but without daily hydroxy, both my NC + my inflammatory vascular symptoms (especially peripheral neuropathy & erythromelalgia & tendon tightening) are a degree more severe throughout the right side of my bod. Before my version of immune dysfunction was re-diagnosed & systemic treatment begun in 2011, this extra degree of symptomatology on my right side had become chronic
While reading up on lupus & sjogrens & vasculitis over the past 4 years, I've found experts seem to agree symptoms aren't always symmetrical, i.e. can be greater on one side than the other....but I am very interested to hear whether anyone here experiences a greater degree on one side....maybe you'll think a poll following on from this question could be interesting?