RE: [TMIC] Question from Randy-Solu-Medrol
Hi Jenna - yes it is bad for your body - I took a bone density scan test & flunked - now I have osteo penia. Bernie From: Jenna [mailto:[EMAIL PROTECTED] Sent: Friday, November 14, 2008 8:47 AM To: [EMAIL PROTECTED]; Butcher, Bernard G (NY80); TMIC-LIST@eskimo.com Subject: Re: [TMIC] Question from Randy-Solu-Medrol Jude, Most of the time when they give you Solu-Medrol for MS or TM you get 1000mgs a day. The dose pac's are much lower dose of steroids. I have such bad reactions to it that I had to be put in the hospital each time I needed it. Instead of doing 1000mg once a day, they have to spread it out and do 250mg every 6 hours. It makes me very sick and I spend 6 days in the hospital. Then come home for a day or two and then go back for a day, because my blood sugar is so messed up and has problems readjusting. Spend a day and get things settled down. I am always very sick for two weeks following the Solu-Medrol. It takes 9 weeks or so before I really start feeling good again. Durning all this time I can't drive and spend most of the time in bed. And am very grouchy <http://mail.yimg.com/a/i/mesg/tsmileys2/02.gif> Thank goodness I have not had to that for almost 3 years now. I am so very blessed and happy about that. I have a friend here that did the Solu-Medrol for the first time and was asking me if I ever had a relaps again would I do the steroids again. And I told her as bad as it is on my body, yes I would because it did help so much. As Frank said in an e-mail there are some bad permanet side effects. It is something you really need to talk about with your Dr. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com Sent: Friday, November 14, 2008 3:39:05 AM Subject: Re: [TMIC] Question from Randy Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a "dose-pack"? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy > Yes, I get this infusion every 3 months, 1G/day for 3 days. It's > prednisone. For me, I get a bit sick after the fourth day, but my neuro > says that that is not the norm - just me. After that I feel pretty good, > stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F Get the Moviefone Toolbar <http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir =http://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown000 1> . Showtimes, theaters, movie news & more!
RE: [TMIC] Question from Randy
Hi Jude - Great to hear from you - hope & pray you are better. I have posted from time to time, but I don't know if I always get through. My life (with Mr. MS) now is: get up, go to work (using walker), come home (totally exhausted) eat, then bed, & do it all again. On weekends, rest up as much as possible for next week. The positive effects are that I feel better for a while, a month or two, then after 3 months get another dose. I also do it because my neuro recommends it (?) I think it's worth it. Plus up until now, I get it done at home. What's a "dose pack"? After the fourth day, I have no pain really, just ill, like, flu-ish - I take two naps per day for two or three days, then I begin to come back to "normal" Bernie From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Friday, November 14, 2008 3:39 AM To: Butcher, Bernard G (NY80); TMIC-LIST@eskimo.com Subject: Re: [TMIC] Question from Randy Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a "dose-pack"? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy > Yes, I get this infusion every 3 months, 1G/day for 3 days. It's > prednisone. For me, I get a bit sick after the fourth day, but my neuro > says that that is not the norm - just me. After that I feel pretty good, > stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F Get the Moviefone Toolbar <http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir =http://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown000 1> . Showtimes, theaters, movie news & more!
Re: [TMIC] Question from Randy-Solu-Medrol
Jude, Most of the time when they give you Solu-Medrol for MS or TM you get 1000mgs a day. The dose pac's are much lower dose of steroids. I have such bad reactions to it that I had to be put in the hospital each time I needed it. Instead of doing 1000mg once a day, they have to spread it out and do 250mg every 6 hours. It makes me very sick and I spend 6 days in the hospital. Then come home for a day or two and then go back for a day, because my blood sugar is so messed up and has problems readjusting. Spend a day and get things settled down. I am always very sick for two weeks following the Solu-Medrol. It takes 9 weeks or so before I really start feeling good again. Durning all this time I can't drive and spend most of the time in bed. And am very grouchy Thank goodness I have not had to that for almost 3 years now. I am so very blessed and happy about that. I have a friend here that did the Solu-Medrol for the first time and was asking me if I ever had a relaps again would I do the steroids again. And I told her as bad as it is on my body, yes I would because it did help so much. As Frank said in an e-mail there are some bad permanet side effects. It is something you really need to talk about with your Dr. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: [EMAIL PROTECTED]; TMIC-LIST@eskimo.com Sent: Friday, November 14, 2008 3:39:05 AM Subject: Re: [TMIC] Question from Randy AOL Email Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a "dose-pack"? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy > Yes, I get this infusion every 3 months, 1G/day for 3 days. It's > prednisone. For me, I get a bit sick after the fourth day, but my neuro > says that that is not the norm - just me. After that I feel pretty good, > stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F Get the Moviefone Toolbar. Showtimes, theaters, movie news & more!
Re: [TMIC] Question from Randy
Hello Bernie It has been ages since we have heard from you. What has been going on in your life? You always have such interesting stories to tell and new ideas you say we ought to try. What is the big idea about Solu-Medrol? What kind of positive effects do get from it? Isn't is comparable to a "dose-pack"? How bad is the pain on the fourth day? I figure that it must be worth it. God Bless, Jude In a message dated 11/12/2008 2:26:12 P.M. Eastern Standard Time, [EMAIL PROTECTED] writes: Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy > Yes, I get this infusion every 3 months, 1G/day for 3 days. It's > prednisone. For me, I get a bit sick after the fourth day, but my neuro > says that that is not the norm - just me. After that I feel pretty good, > stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F **Get the Moviefone Toolbar. Showtimes, theaters, movie news & more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
RE: RE: [TMIC] Question from Randy
Diagnosed with TM in 2002, MS in 2008. But I was getting it before the MS diagnosis. Last time I got it was 9/08, due next month. The sick effect goes away completely in a week, then I feel better. Overall, I don't know if it does anything, but it is supposed to reduce inflammation in my spinal cord and nerve myelin, and therefore prevent damage. Bernie -Original Message- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:55 PM To: Butcher; Butcher, Bernard G (NY80); Jenna; TMIC Subject: Re: RE: [TMIC] Question from Randy > Yes, I get this infusion every 3 months, 1G/day for 3 days. It's > prednisone. For me, I get a bit sick after the fourth day, but my neuro > says that that is not the norm - just me. After that I feel pretty good, > stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F
Re: RE: [TMIC] Question from Randy
> Yes, I get this infusion every 3 months, 1G/day for 3 days. It's > prednisone. For me, I get a bit sick after the fourth day, but my neuro > says that that is not the norm - just me. After that I feel pretty good, > stronger. Bernie, That'sa lot of medication!! For what disease do you get that much Solu-Medro?? Have you started to get the side effects? Good Luck F
RE: [TMIC] Question from Randy
Yes, I get this infusion every 3 months, 1G/day for 3 days. It's prednisone. For me, I get a bit sick after the fourth day, but my neuro says that that is not the norm - just me. After that I feel pretty good, stronger. Bernie From: Jenna [mailto:[EMAIL PROTECTED] Sent: Wednesday, November 12, 2008 1:19 PM To: TMIC; Kim; Martha Fleming; Betty Subject: [TMIC] Question from Randy Randy asked me to forward this. Anyone what to tell him their experience with Solu-Medrol? Jenna [EMAIL PROTECTED] Ok u might forward this to group. I have no forward ability on blackberry. They are treating me with IV methyprnisolone (solu-medrol) and added tergetal for the facial pain. Could someone look up, explain or add personal experiences from the methyprnisolone. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Wed, 12 Nov 2008 05:39:18 -0800 (PST) To: <[EMAIL PROTECTED]> Subject: Re: October TM meeting Very good Randy! Hopefully the new ENT will have good news too! Take care and keep me updated. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]> Sent: Wednesday, November 12, 2008 9:01:11 AM Subject: Re: October TM meeting Great news the doc says that it isn't ms. The facial nerves are inflamed but the brain stem is ok. Theyu don't knw the cause but believe it is an ear infection that attacked the nervous system. But it isn't a nuro problem per say. The steriods seem to be working. They also have a better ENT going to look at me. They say that I will probably have to have surgery on inner ear. But that is left up to the ENT. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Tue, 11 Nov 2008 15:56:05 -0800 (PST) To: <[EMAIL PROTECTED]> Subject: Re: October TM meeting Wow what a day. Well I am praying for you and hoping you will recover quickly. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]> Sent: Tuesday, November 11, 2008 7:43:57 PM Subject: Re: October TM meeting I had two lumbar punctures. The first got nothing. The second was not much better and the guy hit a nerve TWICE that sent a shock to my testees. It was horrific. They did some evoke potential tests where they electricute ur hands and ankles. I had another mri. They did some visual and auditory tests. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Tue, 11 Nov 2008 15:36:30 -0800 (PST) To: <[EMAIL PROTECTED]> Subject: Re: October TM meeting How are you feeling? What are they doing for you?? Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]> Sent: Tuesday, November 11, 2008 7:33:59 PM Subject: Re: October TM meeting Sunday is best for me. I should b out. I thnk the girls said sunday. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Tue, 11 Nov 2008 15:28:19 -0800 (PST) To: <[EMAIL PROTECTED]>; Susan<[EMAIL PROTECTED]>; <[EMAIL PROTECTED]> CC: Martha Fleming<[EMAIL PROTECTED]>; Betty Budnek<[EMAIL PROTECTED]>; RANDY RANKIN<[EMAIL PROTECTED]> Subject: Re: October TM meeting I can meet on Saturday or Sunday just let me know. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]>; Susan <[EMAIL PROTECTED]>; [EMAIL PROTECTED] Cc: Martha Fleming <[EMAIL PROTECTED]>; Betty Budnek <[EMAIL PROTECTED]>; RANDY RANKIN <[EMAIL PROTECTED]> Sent: Tuesday, November 11, 2008 6:12:21 PM Subject: Re: October TM meeting R we going to meet this weekend??? -- Original message from Jenna <[EMAIL PROTECTED]>: -- When and where are we meeting. Sunday is fine with me so that Randy can be there. Please let me know. Thanks so much!! Have a great week all. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Susan <[EMAIL PROTECTED]>; [EMAIL PROTECTED] Cc: Martha Fleming <[EMAIL PROTECTED]>; Betty Budnek <[EMAIL PROTECTED]>; Jenna <[EMAIL PROTECTED]>; RANDY RANKIN <[EMAIL PROTECTED]> Sent: Sunday, November 9, 2008 7:40:53 PM Subject: Re: October TM meeting Maybe we can find something between Hiram and D'ville? -- Original message from Martha Fleming <[EMAIL PROTECTED]>: --
[TMIC] Question from Randy
Randy asked me to forward this. Anyone what to tell him their experience with Solu-Medrol? Jenna [EMAIL PROTECTED] Ok u might forward this to group. I have no forward ability on blackberry. They are treating me with IV methyprnisolone (solu-medrol) and added tergetal for the facial pain. Could someone look up, explain or add personal experiences from the methyprnisolone. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Wed, 12 Nov 2008 05:39:18 -0800 (PST) To: <[EMAIL PROTECTED]> Subject: Re: October TM meeting Very good Randy! Hopefully the new ENT will have good news too! Take care and keep me updated. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]> Sent: Wednesday, November 12, 2008 9:01:11 AM Subject: Re: October TM meeting Great news the doc says that it isn't ms. The facial nerves are inflamed but the brain stem is ok. Theyu don't knw the cause but believe it is an ear infection that attacked the nervous system. But it isn't a nuro problem per say. The steriods seem to be working. They also have a better ENT going to look at me. They say that I will probably have to have surgery on inner ear. But that is left up to the ENT. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Tue, 11 Nov 2008 15:56:05 -0800 (PST) To: <[EMAIL PROTECTED]> Subject: Re: October TM meeting Wow what a day. Well I am praying for you and hoping you will recover quickly. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]> Sent: Tuesday, November 11, 2008 7:43:57 PM Subject: Re: October TM meeting I had two lumbar punctures. The first got nothing. The second was not much better and the guy hit a nerve TWICE that sent a shock to my testees. It was horrific. They did some evoke potential tests where they electricute ur hands and ankles. I had another mri. They did some visual and auditory tests. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Tue, 11 Nov 2008 15:36:30 -0800 (PST) To: <[EMAIL PROTECTED]> Subject: Re: October TM meeting How are you feeling? What are they doing for you?? Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]> Sent: Tuesday, November 11, 2008 7:33:59 PM Subject: Re: October TM meeting Sunday is best for me. I should b out. I thnk the girls said sunday. Sent from my Verizon Wireless BlackBerry From: Jenna <[EMAIL PROTECTED]> Date: Tue, 11 Nov 2008 15:28:19 -0800 (PST) To: <[EMAIL PROTECTED]>; Susan<[EMAIL PROTECTED]>; <[EMAIL PROTECTED]> CC: Martha Fleming<[EMAIL PROTECTED]>; Betty Budnek<[EMAIL PROTECTED]>; RANDY RANKIN<[EMAIL PROTECTED]> Subject: Re: October TM meeting I can meet on Saturday or Sunday just let me know. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Jenna <[EMAIL PROTECTED]>; Susan <[EMAIL PROTECTED]>; [EMAIL PROTECTED] Cc: Martha Fleming <[EMAIL PROTECTED]>; Betty Budnek <[EMAIL PROTECTED]>; RANDY RANKIN <[EMAIL PROTECTED]> Sent: Tuesday, November 11, 2008 6:12:21 PM Subject: Re: October TM meeting R we going to meet this weekend??? -- Original message from Jenna <[EMAIL PROTECTED]>: -- When and where are we meeting. Sunday is fine with me so that Randy can be there. Please let me know. Thanks so much!! Have a great week all. Jenna From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: Susan <[EMAIL PROTECTED]>; [EMAIL PROTECTED] Cc: Martha Fleming <[EMAIL PROTECTED]>; Betty Budnek <[EMAIL PROTECTED]>; Jenna <[EMAIL PROTECTED]>; RANDY RANKIN <[EMAIL PROTECTED]> Sent: Sunday, November 9, 2008 7:40:53 PM Subject: Re: October TM meeting Maybe we can find something between Hiram and D'ville? -- Original message from Martha Fleming <[EMAIL PROTECTED]>: -- Okay. Sounds good to me. --- On Wed, 11/5/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: From: [EMAIL PROTECTED] <[EMAIL PROTECTED]> Subject: Re: October TM meeting To: [EMAIL PROTECTED] Cc: "Martha Fleming" <[EMAIL PROTECTED]>, "Betty Budnek" <[EMAIL PROTECTED]> Date: Wednesday, November 5, 2008, 7:56 PM With Thanksgiving comming up, next weekend might be good -- Original message from Martha Fleming <[EMAIL PROTECTED]>: -- okay. We hope to see you then. I am forwarding Betty a copy of this email so we can pick a day. What would be good for you? --- On Tue, 10/21/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: From: [EMAIL PROTECTED] <[EMAIL PROTECTED]> Subject: Re: October TM meeting To: [EMAIL PROTECTED], [EMAIL PROTECTED], [EMAIL PROTECTED], [EMAIL PROTECTED], [EMAIL PROTECTED