Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Terri, as soon as I sent that message, I started thinking that I had typed Becky, but too late! Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Re: Headache questionDate: Wed, 08 Aug 2007 00:13:07 -0500 Becky, I have a question. My neuro says it doesn't mean anything, but I wonder. The first time I had the palsy it started out with a numb tongue, and sharp as a tack nurse that I was, I just thought, huh, that's weird. Never even thought of Bell's palsy until I looked in the mirror a couple of days later & thought, huh, that's weird. I took both the Pred Dos-pak & Acyclovir & the symptoms resolved within a couple of weeks. Then about a year & half later, it started with pain behind my ear, right on the mastoid bone, & spread up the side of head & down into my neck. It was severe pain, but once again, Bell's palsy never crossed my mind, even though I'd had patients with the same presentation. Then in a couple of days, ta-da! This time I just took the Prednisone, figuring it would clear up right away, like the first time. It's odd, because the pain behind my ear & up/down my head resolved shortly after the droop appeared, only to be replaced by the trigeminal neuralgia. Have you heard of different courses & outcomes of Bell's when it presents differently? Just seems like more than coincidence. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 From: "mosaicgirl1" <mosaicgirl1 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Headache questionDate: Tue, 07 Aug 2007 21:48:44 -0000 Rose,Our situations are so similar. After the Bell's I did developtrigeminal neuralgia. And then I get the stabbing pains in the back ofmy eye, in my ear, etc. I got a prescription today from my rheumy forthat and also for fibromyalgia. I am going to see if it helps any. Ihave tried everything else.Terri G. A new home for Mom, no cleanup required. All starts here. Puzzles, trivia teasers, word scrambles and more. Play for your chance to win! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2007 Report Share Posted August 7, 2007 Terri, as soon as I sent that message, I started thinking that I had typed Becky, but too late! Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: RE: Re: Headache questionDate: Wed, 08 Aug 2007 00:13:07 -0500 Becky, I have a question. My neuro says it doesn't mean anything, but I wonder. The first time I had the palsy it started out with a numb tongue, and sharp as a tack nurse that I was, I just thought, huh, that's weird. Never even thought of Bell's palsy until I looked in the mirror a couple of days later & thought, huh, that's weird. I took both the Pred Dos-pak & Acyclovir & the symptoms resolved within a couple of weeks. Then about a year & half later, it started with pain behind my ear, right on the mastoid bone, & spread up the side of head & down into my neck. It was severe pain, but once again, Bell's palsy never crossed my mind, even though I'd had patients with the same presentation. Then in a couple of days, ta-da! This time I just took the Prednisone, figuring it would clear up right away, like the first time. It's odd, because the pain behind my ear & up/down my head resolved shortly after the droop appeared, only to be replaced by the trigeminal neuralgia. Have you heard of different courses & outcomes of Bell's when it presents differently? Just seems like more than coincidence. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 From: "mosaicgirl1" <mosaicgirl1 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Headache questionDate: Tue, 07 Aug 2007 21:48:44 -0000 Rose,Our situations are so similar. After the Bell's I did developtrigeminal neuralgia. And then I get the stabbing pains in the back ofmy eye, in my ear, etc. I got a prescription today from my rheumy forthat and also for fibromyalgia. I am going to see if it helps any. Ihave tried everything else.Terri G. A new home for Mom, no cleanup required. All starts here. Puzzles, trivia teasers, word scrambles and more. Play for your chance to win! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2007 Report Share Posted August 8, 2007 Rose, I have no idea. I think that I had an atypical presentation because mine came along with shingles. I have seen normal cases that resolved but it was a one time thing. I had a six month break and then everything started again (except the shingles). Later I started problems with my tongue, vocal chords, ear,eye pain etc. One idiot told me I was having hemiplegic migraines, another on told me it was stress, etc. When I am very tired it will come out. When I was on prednisone, I rarely had any issues. When I was weaning off I was having episodes every day. Now that I am on imuran, I have the rare episode. I also have retrobulbar optic neuritis in the left eye that flare up too. But nothing shows up on MRI! Well, who knows. I just make them document it each time. Next time I might take my photo with me and see what they think then. Take care...by the way, we haven't had any more possums since we last spoke. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2007 Report Share Posted August 8, 2007 Rose, I have no idea. I think that I had an atypical presentation because mine came along with shingles. I have seen normal cases that resolved but it was a one time thing. I had a six month break and then everything started again (except the shingles). Later I started problems with my tongue, vocal chords, ear,eye pain etc. One idiot told me I was having hemiplegic migraines, another on told me it was stress, etc. When I am very tired it will come out. When I was on prednisone, I rarely had any issues. When I was weaning off I was having episodes every day. Now that I am on imuran, I have the rare episode. I also have retrobulbar optic neuritis in the left eye that flare up too. But nothing shows up on MRI! Well, who knows. I just make them document it each time. Next time I might take my photo with me and see what they think then. Take care...by the way, we haven't had any more possums since we last spoke. Terri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2007 Report Share Posted August 9, 2007 But nothing shows up on MRI! Terri, Dr. Baughman in Cincinnati told me that it is very hard to see cranial nerve involvement on MRI's. He even did a small study, doing MRI's on sarc patients with 7th nerve palsy. Rarely were they able to find anything on the MRI's. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Oops, sorry, TerriDate: Wed, 08 Aug 2007 17:09:34 -0000 Rose,I have no idea. I think that I had an atypical presentation because mine came along with shingles. I have seen normal cases that resolved but it was a one time thing. I had a six month break and then everything started again (except the shingles). Later I started problems with my tongue, vocal chords, ear,eye pain etc.One idiot told me I was having hemiplegic migraines, another on told me it was stress, etc. When I am very tired it will come out. When I was on prednisone, I rarely had any issues. When I was weaning off I was having episodes every day. Now that I am on imuran, I have the rare episode.I also have retrobulbar optic neuritis in the left eye that flare up too. But nothing shows up on MRI!Well, who knows. I just make them document it each time. Next time I might take my photo with me and see what they think then.Take care...by the way, we haven't had any more possums since we last spoke.Terri More photos, more messages, more storage—get 2GB with Windows Live Hotmail. Quote Link to comment Share on other sites More sharing options...
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