Do I have now ME next to Sjogren or only Sjogren?

A

alalush

Established Member
Hi,

I became sick in 2014 with very long list of symptoms: extreme fatigue, tinnitus, burning sensations, unrefreshing sleep, 247 chronic headache (pressure inside head), neck pain, osteopenia, gut dysbiosis, anxiety, dizzyness attacks, high BP, muscle weakness, back pains, blood pooling, ...
I was treated first for suspected Lyme Disease (1 year) with no improvements. Then I was treated mainly for gut dysbiosis and SIBO (4 years, multiple pulsed regimens ABX: rifaximin, flagyl, azithromycin, clindamycin, ...)
Because I had often dry mouth and sometimes annoying eye pains I did a lip biopsy which was positive for Sjogren (focus score 2). Other tests also point out to pSS.

Main question: do I have now only primary Sjogrens syndrome? Does the ME diagnosis now is erased?

Brief history illness:
2014: after vaccination (Hep A, Difteria, Tetanus) extreme fatigue, tinnitus, 247 headaches, variable complaints, burning sensations, slimming 65kg to 55kg, gluten intolerant, CFS, fibromyalgia, anxiety ...
2016: cardiac check negative, osteoporosis/osteopenia -2.9 T scores
2019: positive lip biopsy for Sjogren (focus score >2), Anti-SSA/ro, ANA, ENA, ANF positive, small-fiber neuropathy biopsy positive (2,09 izv/mm), Complement (C3) has fallen discreetly, normal ESR, normal CKs
 
Hi @alalush. I'm afraid we cannot diagnose each other - our rules don't allow asking for or offering a diagnosis - that needs to be done by a doctor who has your full medical history and examines you and does the necessary tests to eliminate other possibilities.

There are various guidelines for doctors to help them with diagnosis - it depends which country you are in which guidelines they will use. I hope you can find a doctor with some understanding of ME who can help you.
 
I would reframe the question slightly: does an ME diagnosis help you or not, at this point? Unlike pSS, ME doesn't have any treatment that shows efficacy.

Will you get treatment options with an ME diagnosis that you can't access with pSS? Or will a pSS diagnosis mean you'll be told to do more exercise, which could worsen your ME?

If an ME diagnosis helps you, then keep it. If it causes more problems, such as stigma or requirement to engage in treatments you don't want to (GET, for example), then maybe it's worth getting it overturned.

Only you can decide what's right for you. Until we have a biomarker, we can't be 100% sure anyway.
 
Treatment options for pSS are very poor in my opinion. Based on my current biochemistry I could probably only get Plaquenil to try. Other meds such as corticoids or Rituximab are only given when organs are attacked or severe inflammation (CRP, elevated ESR...).
There are some studies where pSS patients with SFN get IVIG and it helped some but not in trials unfortunately.
 
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