Another piece, another question (neg. ebv PCR) - LUPUS UK

LUPUS UK

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Another piece, another question (neg. ebv PCR)

DRunnerchick
DRunnerchick

This week's episode of "As the Stomach Turns" finds us with one question answered- no, I don't have 'mono' or a reactivation of Epstein Barr Virus.

The question remains what caused my unusual 'positive' albeit a likely false positive. The Infectious Disease specialist has sent me back to my neuro or gp. He has suggested that it is likely a cross reactivity with rheumatoid factor or other viral entity that can be involved in other rheumatological conditions such as lupus given my previous experience with RA. He didn't mention MS, although that was the neurologist's last leaning (?) prior to when he sent me to the ID consult.

I have to say that reading over the visit notes though, it irritates the heck out of me that when the doc quotes me, it is selective and a bit out of context. Makes me batty! I return to see ⭐️Neuro next week to get his thoughts. Am I any closer to a correct diagnosis?

D🏃🏽‍♀️

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Welcome to the “thought to be batty” brigade DRunnerchick! My rheum is so far the only one who writes sensible stuff with no slant implying I’m batty - or worse - have “health related anxiety” (neuro). I need a ⭐️ neuro to confirm my orthostatic tremor and properly exclude Parkinson’s - and therein lies my problem. Mine has so far diagnosed small fibre neuropathy, autonomic dysfunction and mild ataxia without so much as one proper investigation!

Neurology in UK is the most deprived of specialists in the western world I was reliably informed. So no chance finding a good ‘un or getting these tests done where I live.

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