Possible PBP

[jmwildcat]

Had dx stoke (?) 10/06. Have had PERODIC left lower facial weakness (lip droops in corner), left tongue weakness, and throat weakness since. Eposodes last 3 to 5 weeks and go away several weeks before reappearing. This month it came back more severe than normal including this time the right side of face and throat. Weakness gets so bad that I can not be understood when speaking. Problem wrost when laying down! Have had spinal tap, MRI's, CAT Scans, --all negative-- seen many doctors. One doctor wants to send me to Mayo Clinic if spells continue. The only thing that has been postive was nerve conduction test (5/07) which showed I had some compromised nerves in left side of face with one dead nerve. Right side had some minor problems. Could I have ALS Bulbar or PBP?

[Rachel]

I am no doctor but in my experience of PBP (my mum was finally diagnosed in January this year) the facial weakness does not come & go. In the early stages the doctors thought my mum had had a series of mini strokes but as the weakness in her tongue & mouth got progressively worse with no improvement (as there would normally be with a stroke) more tests were carried out with eventual PBP dx.

Also the weakness was not restricted to one side, but general.

Could it be Bells Palsey leaving you with nerve damage?

[crystalkk]

Have you been tested for myastemia gravis, just a thought.

[jmwildcat]

Don't have Bell's Palisy- it is involves eye also which mind does not. Also BP is not intermittent. Think I was tested early on for MG.