The Australian Sjögren's Syndrome Association
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Hello I initially thought I ,ay have sjorgrens but am now thinkink perhaps cipd. Can anyone recommend a neurologist in Perth Western Australia, especially one with cipd experience. The rheumatologist I saw after two consultations said go home and exercise.!!! Said my mri was good and no ms,,,,,,,,,,,,,,,,,

I am doing things all the time on my property and its the fatigue and symptoms which cause me to stop.

Initially I developed ascending numbness and shakiness symmetrically from my toes , which slowly spread upwards. Eventually reaching my shoulders. My hands felt weak and legs rubbery. I had some peripheral neuropathy?Raynaulds with freezing feet and hands and sometimes burning.

All my mri cat scans and bloods are normal. Emg came back normal though he only did my good leg.

Left leg at times feels like I have a heavy boot on it , sometimes full of water. I am not depressed anxious or a hypochondriac. However ascending weak shakey feeling seems to have lessened and replaced with dull aching....................Paul any advice appreciated

2 Replies

You need a referral to a neurologists from your GP and make the neurologists aware it could be sjogrens

Neurologic complications - Johns Hopkins Sjogrens Center

go to this website and read up on it and take a copy with you.


Thanks Beverley, I am in Perth Australia, now pushing for a neurology apt as my feet feel like stumps some days, though I get on with life its hard to ignore .................Paul


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