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Sjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Dec 9 10:31am | Replies (661)Comment receiving replies
I am trying to gather information for my cousin who has been suffering from chronic face pain for 10 months or so. She has constant tingling, she says it feels like worms are in her face, numbness around chin,tongue is numb and teeth constantly chatter. She has been diagnosed with sojgrens syndrome but although put on 60 m of prednisone a day and been to various doctors she is getting worse..loosing her ability to walk without stumbling, teeth getting loose and hair falling out...can anyone she'd light on this...
Replies to "I am trying to gather information for my cousin who has been suffering from chronic face..."
Thank you John for responding, She has been to a neurologist, rheumatologist and has had MRI, scans and it seems she is getting worse..she can only walk a short way before stumbling and her vision is off...at this point it is my opinion she starts over a specialty hospital focusing on this type of disease
I would urge your cousin to follow this up. It sounds like something more than Sjogrens to me. Mine is related to Psoriatic Arthritis. And Sjogrens occurs with other auto immune diseases. Her symptoms imply something else is going on. It can take forever to diagnose these things.
She has gone to about four different doctors..I think is a mistake since she is getting nowhere but worse...I hope you get better and thank you for this email. I will try to get her on this site as it helps to speak to others in the same position..God bless
Thank you for your good wishes. Just had my second dose of Cimzia. It is supposed to take 3 months to take effect. I also use Restasis for dry eye. But I can't remember how long or how many Drs I saw - we travelled a lot for my husband's job. It was a good ten years or more. First symptom was falling flat on my face because my right hip gave way. Quite spectacular when you do it in the middle of a restaurant! Without the benefit of wine even!!
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Hello @sistermac, welcome to Mayo Connect. I am sorry to hear about your cousin. Hopefully others with similar diagnosis can join in the discussion and provide some information. I was able to find a few sites that may provide a little more information if you have not already found them:
Mayo Clinic Sjogren's syndrome - http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Sjogren's Syndrome Foundation - https://www.sjogrens.org/
Is it possible for your cousin to seek a second opinion from a specialist? Thank you for being an advocate for your cousin. If you can, please share any progress or findings you make.
Good luck...John