Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 I think somebody, Janet maybe?, had an important medical appt. for 2/8. Whoever it is, I'll be sending positive thoughts. Ramblin' Rose Moderator With MSN Spaces email straight to your blog. Upload jokes, photos and more. It's free! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Rose, Janet may have one too but I am going to Duke on the 8th to see the Dr. Skeen - remember I believed what you wrote in the email? By the way, saw the pulmonologist today and the hilar nodes have " shrunk " minimally but I will be seen again in three months for another chest CT/appt. to see what is going on in the lungs. I have had two days of facial palsy ....I realized that this had been going on for 7 years now. How can anyone think this is normal???? Well, I could really go on and on but it wouldn't serve any purpose today so I will get off. I will let you guys know wha tthey say at duke. Thanks. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Terri, it must have been you, because I remember that it was for Duke. I will be thinking of you & hoping for a doctor with a big brain & a small ego. Terri, have you seen a doctor for this latest facial palsy? In the past, were you given a short course of Prednisone and/or Acyclovir for it? I've had 2 episodes. The first time (blamed on a virus) I demanded & got both Pred & Acyclovir after doing some Internet research. All the symptoms resolved within a week or two. The second time I was just given the Pred & didn't push for the Acyclovir. That time was much worse, required several weeks of work with a speech therapist doing electrostimulation of the facial muscles, and never totally resolved. No one else would notice, but I can tell. Of course the doctors will tell you that 80% resolve without treatment, but who wants to take a chance on being one of the 20%? And the thing is, the sooner you are treated, the better. The second time I also had a trigeminal neuralgia which started shortly after the palsy, with severe pain in my face. That lasted several weeks, helped some with Neurontin, then gradually faded to just a dull, constant ache in my eye & cheek. It's been 4 years & it's still there. Several times a month it worsens to a sharp, stabbing pain in the eye & if I don't take something, the whole side of my head will hurt. Surprisingly, after trying several headache meds, what works the best is Norgesic Forte, usually needing 2 doses. I have one of those headaches starting tonight, which is why I'm still awake at 2am. Anyway, the trigeminal neuralgia probably wasn't related to the facial nerve palsy, but I can tell you that if I ever get another facial palsy, I'm taking Pred & Acyclovir. Won't hurt, might help. What do the rest of you think? Have you been treated for Bell's palsy or facial nerve palsy? Do you think it helped? FYI, for those who haven't experienced this, there are often warning signs before the actual drooping occurs. The first time I had numbness of my tongue for 3 days. I kept thinking I must have burned it; didn't even think of Bell's palsy until I looked in the mirror one morning. The second time it started with pain behind the ear, on the mastoid bone. The pain was severe & spread up the side of my head & down into my neck. This time I did think "Oh, no, not another Bell's palsy!" Sure enough, 2 days later, big droop. My doctor didn't think the difference in prodromal symptoms was related to the severity of the palsy; just the luck of the draw. But what does he know? I'm serious, probably nobody really knows that kind of stuff, because they don't think it's important, and I guess it isn't important, and I'm rambling. Terri, kiddo, try to relax about the appt. Write down some retorts in case the doctor blows you off. Memorize them & practice saying them in front of a mirror, or preferably in front of a video camera. Like, "You big boob! What do you know?" Or "Liar, liar, pants on fire! Made ya look!" I'm sure our creative members can come up with some more. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: appt. coming up?Date: Tue, 07 Feb 2006 00:04:14 -0000Rose,Janet may have one too but I am going to Duke on the 8th to see the Dr.Skeen - remember I believed what you wrote in the email? By the way,saw the pulmonologist today and the hilar nodes have "shrunk" minimallybut I will be seen again in three months for another chest CT/appt. tosee what is going on in the lungs. I have had two days of facial palsy...I realized that this had been going on for 7 years now. How cananyone think this is normal????Well, I could really go on and on but it wouldn't serve any purposetoday so I will get off. I will let you guys know wha tthey say atduke.Thanks.Terri G.~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Rose, As usual, you put a smile on my face; at least the half that works right now. I have had both acyclovir and predisone for my face, but they won't give me any meds now because they don't want to mask my symptoms. I actually had shingles on that side of my face in 1998 but I had a Bells type of affect even then. I had blebs in my mouth, up my nose, on my eyelid, on the left side of my nose and across my face. In hindsight I should have had my face photographed so everyone could see how severe it was. At that time I saw infectious disease dr. who said that healthy people just don't get shingles. I had been having some arthritis syptoms and he thought they were connected. 6 months after the initial attack the drooping, drooling and pain started again and since then I have been on and off steroids. I did a number of antivirals during these attacks (in very large doses) but with no relief. Prednisone does the trick but as soon as I go off, it will come back. The strange thing though was that it never affected my eye. I even had an emg on that side of my face. I do not have any permanent damage right now, but who knows what the future holds. As far as ear pain, boy that can really be a b*****tch. (Do I get extra points for the explative?) My ortho thinks that my joint problems are connected to everything, but everyone discounts that. Why, at 41, did I have an erosion of the femur were it meets the tib/fib at the kneecap. I have had the synovium biopsied on that knee and fluid removed on the right knee and all it showed was chronic inflammation. So I guess I am just a big ball of inflammation - what do you think? I am so inflammed, I am waiting for my hair to catch on fire. Well, once again thanks for the "Rose Insight". It always helps. As far as the doctors go, don't worry about me. They put their pants on the same way they do and I am in no way intimidated by them. I'll tell like it is. If I don' write tomorrow night, I will on Thursday to let you guys know. Thanks for everything. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Rose, As usual, you put a smile on my face; at least the half that works right now. I have had both acyclovir and predisone for my face, but they won't give me any meds now because they don't want to mask my symptoms. I actually had shingles on that side of my face in 1998 but I had a Bells type of affect even then. I had blebs in my mouth, up my nose, on my eyelid, on the left side of my nose and across my face. In hindsight I should have had my face photographed so everyone could see how severe it was. At that time I saw infectious disease dr. who said that healthy people just don't get shingles. I had been having some arthritis syptoms and he thought they were connected. 6 months after the initial attack the drooping, drooling and pain started again and since then I have been on and off steroids. I did a number of antivirals during these attacks (in very large doses) but with no relief. Prednisone does the trick but as soon as I go off, it will come back. The strange thing though was that it never affected my eye. I even had an emg on that side of my face. I do not have any permanent damage right now, but who knows what the future holds. As far as ear pain, boy that can really be a b*****tch. (Do I get extra points for the explative?) My ortho thinks that my joint problems are connected to everything, but everyone discounts that. Why, at 41, did I have an erosion of the femur were it meets the tib/fib at the kneecap. I have had the synovium biopsied on that knee and fluid removed on the right knee and all it showed was chronic inflammation. So I guess I am just a big ball of inflammation - what do you think? I am so inflammed, I am waiting for my hair to catch on fire. Well, once again thanks for the "Rose Insight". It always helps. As far as the doctors go, don't worry about me. They put their pants on the same way they do and I am in no way intimidated by them. I'll tell like it is. If I don' write tomorrow night, I will on Thursday to let you guys know. Thanks for everything. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Terri How about Up your nose with a rubber hose for your reply to the doctor? I know we're all old enough to remember that one. Rose Please keep rambling! I learn more everytime you do. I get a stabbing pain in my eye & the droop & when I mentioned it to the chemo doc she just shrugged it off & so did I. I'd go see my neurologist but don't have any medical coverage at the moment & I'm not sure if they would take me on a payment plan. Geez hurry up November. OK before anybody scolds me I'll call & see if they'll work me in. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Go get em Terri! Sounds like we're all putting on our armor for the battle. LOL grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 , If the pain is in your eye you might want to see your ophtholmologist - do you think that would be cheaper? By the way,I'd rather say up your butt with a - what rhymes with butt? Any suggestions giggles? Terri G. > > > Terri > How about Up your nose with a rubber hose for your > reply to the doctor? I know we're all old enough to > remember that one. > > Rose > Please keep rambling! I learn more everytime you do. I > get a stabbing pain in my eye & the droop & when I > mentioned it to the chemo doc she just shrugged it off > & so did I. I'd go see my neurologist but don't have > any medical coverage at the moment & I'm not sure if > they would take me on a payment plan. Geez hurry up > November. > > OK before anybody scolds me I'll call & see if they'll > work me in. > > grannylunatic@... > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 Thanks, I also hope to kill them with my viscious wit... Terri > > > Go get em Terri! Sounds like we're all putting on our > armor for the battle. LOL > > grannylunatic@... > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 a coconut would be pretty uncomfortable with that scratchy stuff on it LOL grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2006 Report Share Posted February 7, 2006 a coconut would be pretty uncomfortable with that scratchy stuff on it LOL grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2006 Report Share Posted February 8, 2006 Terri, we can all sympathize with your all-over inflammation. I keep sugar-free popsicles in the freezer cuz my insides heat up all the time. Another lady sucks on ice chips all day. You can put your hand somewhere on my body daily and it will be very warm. Excuse me though...I had to laugh, though i know it's not really funny...but the way you put it(...big ball of inflammation...) sounds to me like you (or any of us) could spontaneously combust or something...lol. Who knows...maybe all those reports are true and all those people had sarc! LOL I also have joint problems and they usually just shrug it off as old age. Hey! I was only 42 when I had my last big flare...which has lasted over 7 years now. And good for you not being intimidated by those sons a bitches. Yeah,...just spell it out, girl, cuz we've had a whole lot worse here. Anybody as sick as we are deserves to 'let it rip' once in awhile. I have F'd it up with the best of them once in awhile and I have had some real frickin bad days ...lol. Thank God for the internet and this group, hey? hugs S.mosaicgirl1 wrote: Rose, As usual, you put a smile on my face; at least the half that works right now. I have had both acyclovir and predisone for my face, but they won't give me any meds now because they don't want to mask my symptoms. I actually had shingles on that side of my face in 1998 but I had a Bells type of affect even then. I had blebs in my mouth, up my nose, on my eyelid, on the left side of my nose and across my face. In hindsight I should have had my face photographed so everyone could see how severe it was. At that time I saw infectious disease dr. who said that healthy people just don't get shingles. I had been having some arthritis syptoms and he thought they were connected. 6 months after the initial attack the drooping, drooling and pain started again and since then I have been on and off steroids. I did a number of antivirals during these attacks (in very large doses) but with no relief. Prednisone does the trick but as soon as I go off, it will come back. The strange thing though was that it never affected my eye. I even had an emg on that side of my face. I do not have any permanent damage right now, but who knows what the future holds. As far as ear pain, boy that can really be a b*****tch. (Do I get extra points for the explative?) My ortho thinks that my joint problems are connected to everything, but everyone discounts that. Why, at 41, did I have an erosion of the femur were it meets the tib/fib at the kneecap. I have had the synovium biopsied on that knee and fluid removed on the right knee and all it showed was chronic inflammation. So I guess I am just a big ball of inflammation - what do you think? I am so inflammed, I am waiting for my hair to catch on fire. Well, once again thanks for the "Rose Insight". It always helps. As far as the doctors go, don't worry about me. They put their pants on the same way they do and I am in no way intimidated by them. I'll tell like it is. If I don' write tomorrow night, I will on Thursday to let you guys know. Thanks for everything. Terri G. Yahoo! Mail - Helps protect you from nasty viruses. Quote Link to comment Share on other sites More sharing options...
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