My mother has been diagnosed with Sjogren’s syndrome, but her main symptoms are neurological- she is very ataxic when she walks, has tremors also. We have been told that she has an unusual presentation for Sjogren’s, and I’m wondering if anybody out there has the severe neurological problems that she is having? Thank you
Hi,
I have peripheral neuropathy. My legs ache so bad some times I want to
gnaw them off. My feet burn so bad that sometimes I have to put cold
towels on them. My Neurologist diagnosed me with with it as secondary to
Sjogrens Syndrome. Oh and I also suffer from migraines.
maggiemay so wisely said:
I am a Nurse, so I know that kind of pain can be terrible. My Mom has some neuropathy, but so far just changes in her sensation and not really any pain.
May I ask what ataxic means? I have neuropathy though…fingers, toes, legs, go numb and burn. Also, when I walk sometimes it seems I’m not lifting my feet up like I should and I trip a lot. I also drop a lot of things some days while I’m trying to pick something up. I have wondered if it was Sjogrens related. I have read every book on Sjogrens and I know it’s all in there except for the tripping over my own feet. It doesn’t happen all the time…only when my mouth and eyes are at their driest.
Lacey
Ataxia is motor incoordination. Like when I set something down overlapping the edge of the counter, knocking over my coffee cup. Once I let go of a colander and when I moved my hand off of it, I ended up throwing it at my son–like my hand stuck to it.
I also frequently trip over my toes, throw rugs, etc–sort of like a drop foot. This is not due to ataxia.
2 rules to success in life:
- Don’t tell people everything you know.
Original message from Lacey:
I most definitely have Ataxia then. I kept hoping in the back of my mind that all my problems like that isn’t MS. Everything I touch sometimes goes in the floor or I put something down and when I move my hand back I spill it. Hummmmmmmmm… Now I know I’m not alone.
Thanks.
Lacey
I have a dear friend who has neuro problems due to Sjogrens. She was almost mis-diagnosed with MS. It is so important to get the word out about this issue. Too many doctors (neuros and rheumys alike) do not believe that there is a connection between Sjogrens and the Central Nervous System.
Connie