Neuro Sjorgens - newly diagnosed
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Hi, I would appreciate any help /advice from anyone who as experienced neuro sjorgens. I was diagnosed yesterday following bloods, lip biopsy and clinical symptoms of collapsing, loss of speech, numbness, stroke like symptoms and temporary tingling and loss of feeling in hand and foot. I also have lupus verlap, Hashimoto's, under active thyroid and reynaulds. I work full time but have been off work for 3 weeks now. I started a 6 week course of steroids (starting on 60g for first week), topiramate, and mycophenolate (immuno suppressant). I am still awaiting blood results for 3 other tests - which my rheumy is keenly awaiting - Anti-NMDA receptor Ab level. This is all new to me i.e. the neuro symptoms - loss of speech and confusion being the worst along with short term memory loss. The immuno sppression is initially for 18 months but could well be longer. Doc told me the steroids should dampen things down pretty quickly - but what if it doesn't. Does any one know much about this stuff as it is scaring the life out of me. I can no longer go out as I have had episodes this past week on a daily basis and live alone and I really need to get back to work as I need the money for rent but last time I tried to travel I collapsed on the underground platform ( had seizure and people thought it was a stroke so ended up in A&E - this has happened 7 times in past 3 weeks).. Any help would be really appreciated. Thanks
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Beverley_01 Guest
Posted
Hi there fatcat,
not sure which country you reside in but, have you applied for sickness benefit if you're not getting sick pay? ask the doctors to estimate how long you may be off.
I'm not suprised you are wary of going out and find the symptoms scary. Take one day at a time, be gentle on yourself and try not to panic. ask friends and/or family to help out right now.
Beverley