Neurosarcoidosis and Bells Palsy

Has anyone had Botox for Bells Palsy? I was just diagnosed with neurosarc and I have had facial paralysis for over a year. I am going to Vanderbilt for treatment.

Reply Report post

14 replies. Join the discussion

I'm interested in what you learn with this post. I have twitching in my eyelid and corner of my mouth. Sometimes I have a couple of hours where the eyelid twitches so much that it keeps my eye closed making it hard to see. Then it will be OK for a while. Symptoms of neurosarc, too. Botox has been proposed for this as well, and I'm not sure if what I have is bad enough to go that route.

Reply Report post

I was just proposed that as well. I am going to do it. My nuero is going to make the botox seem medically necessary for insurance purposes. I have a lesion in my meckel's cave that has caused my trigeminal nerve to be damaged. I also have muscle atrophy. My nuero emailed me the other day about it. I can't tell the fellas at work that I am getting botox.. hahaha.

Reply Report post

Lol Stylzz!!!

Wow that it's gone in for a YEAR!! Whenever I get Bell's Palsy I go into hospital and get massive doses of IV steroids and it goes back to normal in a few days.

Reply Report post

Dr Valedon says it is not really Bells Palsy, that it started out as Ramsey Hunt Syndrome and because of the neurosarcoidosis that it has remained. I now have twitching in my eye and mouth.

Reply Report post

Stylzz, be sure you post your experiences with getting the shots. Getting shots in the corner of my eye kind of freak me out so I've just been putting up with it. Yes, I know people do this all the time for cosmetic reasons, I'm just a chicken.

Reply Report post

Fignewton565:-


Please let us know what is the outcome at Vanderbilt....maybe a website address, if possible. Added knowledge for us here. Thanks!!!

Reply Report post

Good morning,
really need some info and thoughts here. I have lung involved sarc, on 20mg of Pred per day. I have complained to my primary and Nuero doc for two years about the left side of my scalp having lumps and so sore you can't touch it. My hair was falling out and vision problems coming and going. Last Dec the Nuero doc sent me for a brain MRI, she said it didn't show Sarc in the brain. I got the report
and it showed changes in the white matter? I looked up what would cause changes and the first word to jump off the page was Sarc!
So now I have gone another year, my primary upped the Pred from 10mg to 20, the scalp soreness isn't as bad and my hair quit falling out. That was about 3 months ago. I saw my Nuero doc 12-10-13, told her about numbness on the left side of my body that comes and goes, but mostly facial numbness and vision problems, feels like I'm seeing double when it happens which is more and more often. Now last week I started having a sharp pain in my left temple followed by a headache behind my eyes, temple really sore to touch. I was suppose to have a brain MRI today, someone coded my referal wrong and it had to be changed so they put it off until next Sat. the 25th! I looked up what would cause this temple pain, Temporal Arteritis, so I looked up if Sarc could be involved. Of corse, as long as this has gone on the blood restrition to my brain and eyes has most likely caused perm damage. What I would like to know what can they do about this? Any thoughts or info would sure help!
God Bless
Keep The Faith!
Barb

Reply Report post

Changes in white matter can be sarc, they can be MS, they can be evidence or tiny strokes....or far more often, they can be normal ordinary changes that show up in our brain as we age, particularly if we have a little high blood pressure. So don't freak out too much over the appearance of changes in white matter.

The other symptoms - especially your eye symptoms - do sound like there is something going on. Besides your MRI, make an appointment with your ophthalmologist.

Reply Report post

Mine isn't technically Bell's palsy either, but a parotid flare from Heerfordts Syndrome of Sarcoidosis. Same effect as bells, different cause.

; )

Reply Report post

Tofumonkey, I think getting botox shots has the potential for a great story! With your luck, there would have some kind of twist - some disaster that only you could encounter.

Reply Report post

Oh good lord yes. That's why I'd never consider it.

The likelihood of something going horrifically wrong with the experience for me is just far too high.

Reply Report post

I'd like to hear from people that have Botox while on prednisone. We're there any strange symptoms or reactions.

Reply Report post

I can't tell you about Botox, but there's a similar therapy that my naturopath has recommended and I'm seriously considering. This is big in Germany, not so much in the U.S. Its called Neuraltherapy, also called Sphenopalatine ganglion injections. I have neurosarc affecting my trigeminal nerve. I'm favoring this procedure because I have noticed that novocaine from my dentist and lidocaine from my other doctor make my nerves behave properly for a time. My naturopath says he's treated others and the first time the relief is short; the next time the relief is a week or two; the next time a month, and so on.

If anyone has personal experience with this, please do tell.

CactusBarb, if you'll private-message me, I have some advice. I've been through much of what you describe.

Nancy

Reply Report post

I will give updates about botox when I start. My nuero isn't dx as sarcoidosis because of the insurance company. She is dx by its medical terms synkinesis and hyperlacrimation, although, she said it is the cause and effect of sarcoid. She also stated that going forward it will take some time to correct if at all. I said lets go for it. I am tired of this feeling in my face.

My face has a lot of nerve!!! Lol

Reply Report post

Please log in to reply

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders