Long Term Bells Palsy

[mo02]

I was diagnosed with Bells Palsy almost 6 years ago after the birth (and 6 days later, the loss) of our son.  I still have residual effects and some synkenesis.  An MRI was never performed nor were any other diagnostics.  Can an MRI determine if the nerves were completely severed and must just accept my "new" face or if I still have hope of regaining some muscle control (via facial retraining, etc.)?

[bellspalsystinks]

First I would like to tell you I am very sorry to about the loss of your son. My thoughts and prayers go out to you and your family.
I too have had bells palsy for over 5 months now. The first 2 months were terrible, I had terrible pain and I could not find a doctor that knew how to help me. My neurologist kept ordering test. I had 3 MRI's and and MRA done. They knew that I had more than one nerve that had been attacked, but they didn't seem to know what to do to fix it. I finally found an ENT that got me PT 3 days a week (with a PT who had worked with a number of bells palsy patients) I am still paralized on the right side of my face, but I see an improvement. My eye lid doesn't droop as much and my eyes and mouth look symetrical again. I also use an electrical stimulator on my face every day. I have exercises I do in the mirror every day. I hope to someday smile again and blink my eye, but I have come to terms with the fact that I may be like this forever. I might not regain my muscle control. It is what it is. I do hope you find somone who will help you. Best of Luck!

[caroline747]

Hi. I also got facial paraylis after the birth of my daughter( now 11). Unfortunately the only way you can change you facial muscles in excercise, that took me years to figure out!! There seems to be little research into bells palsy as no one seems to know the cause. Did you have an epidural? If yes I think you may not have 'bells palsy' but damage to the nerves caused by medical negligence. I have researched this for 11 years and although only a lay man with no medical training I believe you need to demand some answers. I am constantly checking for new research which is why I also posted here in the hope that a doctor could give me some more details as purchasing research is pretty expensive!!

On a side note I am sorry to hear about your baby. We lost a baby last year 20mins after birth due to a rare condition called aflp. My thoughts and prayers are with you. It's a very difficult thing to cope with.

[debgehart]

I have had Bell's Palsy symtoms for 30 years now.  I know it is caused from stress ... because at 17 years old I was on the phone having a terrible argument with my boyfriend and the right side of my face completely stopped working.  I could not shut my eye for months (manually closed it at night), could not smile or move eyebrows.  For the last 30 years my eyebrows are different, my eye looks closed in all pictures, eye watering, weak face, and my smile is lopsided still.  As I age, it gets even worse with skin now saging with it.

I do not know why research has not related Bells' Palsy to stress after all these years.  I see so many victims online saying it was stress related. I also dont understand why the medical community does not have more information about long lasting effects of Bell's Palsy when so many victims online still have problems most of their lives.  Where is the research money going???

[FRC23]

See a sleep center. It sounds like narcolepsy. Viruses and some vaccines can actually cause it.

I went undiagnosed for about 15-20 years, until I finally saw a sleep specialist and she nailed the diagnosis right away. The vast majority of doctors have absolutely no idea what it is or what it looks like, and no routine lab tests, MRI, CT scan, x-ray or anything of that nature will detect it. 75% of people with narcolepsy never get diagnosed in their lifetime.

It doesn't look the way you think it looks. Common misdiagnoses are depression, epilepsy, and migraines. I struggled for years to find an answer, and was misdiagnosed several times. I had it with just sleepiness during the day and what looked like insomnia at night for probably about 15-20 years before I ended up with more serious symptoms of narcolepsy that actually included cataplexy (random muscle weakness that can either be isolated, or widespread).

The cataplexy manifested first in my face, as what looked like episodes of Bells Palsy that came and went when I was tired, stressed, or even when I was happy and smiling.  But when I paid closer attention I realized I got weakness and twitching (not uncommon) in my other muscles sometimes too, though I chalked it up to clumsiness until I paid attention.

I was tested for epilepsy, migraines, MS, all kinds of things. But nope, it turned out to be narcolepsy!!

Get seen by a sleep center!