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.

[jmwildcat]

now have pain in left ear, left side of throat, and left side of chest when I exert myself. still have tinnitus. can still feel lower facial weakness on left side-mouth does not droop often. have had some trouble swallowing recently-chocking on food & liquids. right shoulder seems weak. right thum is weak & becomes dislocated when using it. neuro thinks I have Glossopharyngeal Neuralgia. the pain in neck started in early 07 but was intermittent then.

[drstw64]

Is there a cure? My sister was diagnosed with bulbar palsy last year. She is an AFrican American 61 year young woman. She has not symptoms other than she can't speak or is having trouble swallowing. She doesn't have a feeding tube and has lost a lot of weight. I'm scared and so are her children and our mother. It's sad to look at her in the face and see that she is drooling cuz she can't keep her mouth closed. Her mood swings make you want to cry. Sometimes she just laughs uncontrollably until she starts to choke. Sometimes the same thing happens and she cries. I think she's ready to get the feeding tube now. What can we do? We live in Chicago.

[Al]

Unfortunately there is no cure. There are meds to help dry up the saliva as well as help with the emotional lability which is the name for uncontrolled laughing or crying. When they can't eat without choking a feeding tube is really the only option. Has she been to an ALS Clinic? They could explain the options. Have you registered with ALSA or MDA?
AL.

[drstw64]

Well I'm sad to say my sister passed away on Friday, October 9, 2009 at 2:00 a.m. It has been an emotional rollercoaster for she and my family. The most difficult thing was watching her succumb. She was unable to communicate verbally or written. I purchased a cell phone for her with a keyboard so that she could communicate with us. Near the end she couldn't even manipulate the keyboard. She had a feeding tube and was trying to hard to stay alive. She lost control of her neck muscles which caused her head to lay down on her chest. Her eyes were bulged as she was struggling to breathe and hadt o have breathing treatments on a regular basis. She hesitantly agreed to hospice service maybe 3 months before she passed. It hurts really bad to watch a vibrant young woman of 62 suffer and wither away in front of us from a disease that we don't know anything about. Our mother who is 81 is still living in denial that she had this disease. My sister gave her body to science in hopes that a cure is found to help someone else.

[sesl]

I'm so sorry to hear about your sister. This disease is so tragic. Your sister sounds as if she was very brave. I wish there had been a cure in time for her.

sesl