• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. L

    Seronegative Sjogren, what's new?

    Sorry, whats MBL? I won’t get another biopsy without paying for it, as the NHS has discharged me from their Sjögren’s rheumatology service on the basis of a negative biopsy. I asked another rheumatologist that I see on occasion if the biopsy being so close to the cutoff was significant and he...
  2. L

    Seronegative Sjogren, what's new?

    I am not sure how to grade it. At one stage I was bedridden totally. That was first year. I had enormous cognitive issues, at that stage. It was a terrifying experience. The sfn developed rapidly during that time and was an overnight onset. I have improved over the past 4 years in that I can...
  3. L

    Seronegative Sjogren, what's new?

    I have NLD SFN and Dysautonomia. My lip biopsy was 0.9 focal score so no SS diagnosis for me. My sister has SS and more recently SLE. She is 10 years older than me and her antibodies only popped up last year but she’s been on off poorly for years with fatigue and other things but has never been...
  4. L

    Testing by specialist doctors ?

    I was wondering how your appointment with Dr Bansal went? A little late I know but I’m just researching him at the moment.
  5. L

    Fatigue and sore back

    I would be very grateful, thank you.
  6. L

    Fatigue and sore back

    I am new yes, it won’t let me message anyone either Not sure how this all works!
  7. L

    Fatigue and sore back

    @ryan31337 Would you be able to message me please? I’m under the same cardio as you and have been referred for sympathetic microneurography with dr Serra, and wondered if I could speak with you about it?