Nero symptom with lupus: I was diagnosed 2 years... - LUPUS UK

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Nero symptom with lupus

markb1113 profile image
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I was diagnosed 2 years ago with lupus. I have been developing numbness, tingling, dizziness. Sometimes vision disturbance and of course fatigue. Has anybody else had as much and what did your Rheumatologist do to improve symptoms?

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markb1113
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Barnclown profile image
Barnclown

Hello mark

Yes, these have all been persistent flaring signs & symptoms in my version of infant onset lupus for as long as I can recall...I'm 63 now.

Before my early diagnosis was recovered, I managed these issues simply by conscientious lifestyle techniques, especially pacing my activities vvvvvv diligently, and sleeping a lot. Unfortunately, by the time 6 years ago when a brilliant rheumatologist figured out the lupus underlying the cumulative multisystem damage caused by my lifetime without effective daily systemic treatment, we could only concentrate on slowing down the rate of ongoing debilitation. Now my care is mainly palliative. But I am in less pain, and gave more stamina, resilience & comprehension than I have since my early 20s

Lucky me, the daily oral combined therapy meds I'm on now do keep the signs & symptoms your asking about reasonably damped down: hydroxy + amitriptyline + myco + pred. And I do continue all the lifestyle management alongside my meds...otherwise things get worse

Hope something in there is helpful

🍀🍀🍀🍀 coco

PS I noticed you were interested in Rh neg & immune dysfunction. Rh neg features in my close family history...for all I know, I may be Rh neg. but I've never been told my blood type...which frustrates me no end! I have files full of fine detail from Rheumatology & immunology on many many aspects of my blood labs, but not my actual blood type. Are you Rh neg? The paper paul found you is vvvv interesting

markb1113 profile image
markb1113 in reply to Barnclown

I am blood type A negative. And there seems to be a link to connective tissue disease.

Barnclown profile image
Barnclown in reply to markb1113

Thanks.

Sorry but I know v little about blood types: so, does type A neg mean you are Rh negative?

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