Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Deborah- My mother was told to get DBS for her Parkinson's due to her inability to tolerate Sinemet. Will the DBS help the MSA also? Re: Rash and MSA Hi, I just got back from the doctor's office. I was told that my rash is because of my MSA, specifically that my immune system is not functioning correctly. I was advised not to even go in our hot tub (which I just got back into working order day before yesterday) or even a swimming pool because I am likely to have a reaction to the chemicals in it. He said that the MSA is causing a lot of the different major organ systems in my body to not work right. (Reality check from him because of my denial) He is a very kind doctor. He always spends a lot of time with me and answers any questions that I have. He looked truly sad when he told me that he doesn't have any magic answers. He ordered a number of blood tests and increased the dosing on 2 of my meds but is being very cautious with adding any additional medications until after the blood work comes back because he is afraid that I might get an even worse reaction. I don't know why, by now, I haven't figured out when I go to the doctor they are not going to give me some magic pill that will make me well. Because of the botched DBS and the resulting infections that I had earlier this year, they cannot even give me anything to " make me more comfortable. " Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on steroids for a week. I'm glad ya'll are here. I have to admit something to all of you so that I can have the courage to face it myself. I won't be able to have the DBS redone for my MSA. I was scheduled for July 10 (penciled in) but the reality is that the MSA is progressing, I'm not getting over what my body went through from the brain infection in January and if I can't even take a darvocette...I would never live through general anesthesia. Once again, I find myself back to that point of having to accept that this is as good as it is going to get and I'm going to have to deal with it. (Denial is so much more fun than reality)! Deborah aka Tenacity _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Deborah- My mother was told to get DBS for her Parkinson's due to her inability to tolerate Sinemet. Will the DBS help the MSA also? Re: Rash and MSA Hi, I just got back from the doctor's office. I was told that my rash is because of my MSA, specifically that my immune system is not functioning correctly. I was advised not to even go in our hot tub (which I just got back into working order day before yesterday) or even a swimming pool because I am likely to have a reaction to the chemicals in it. He said that the MSA is causing a lot of the different major organ systems in my body to not work right. (Reality check from him because of my denial) He is a very kind doctor. He always spends a lot of time with me and answers any questions that I have. He looked truly sad when he told me that he doesn't have any magic answers. He ordered a number of blood tests and increased the dosing on 2 of my meds but is being very cautious with adding any additional medications until after the blood work comes back because he is afraid that I might get an even worse reaction. I don't know why, by now, I haven't figured out when I go to the doctor they are not going to give me some magic pill that will make me well. Because of the botched DBS and the resulting infections that I had earlier this year, they cannot even give me anything to " make me more comfortable. " Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on steroids for a week. I'm glad ya'll are here. I have to admit something to all of you so that I can have the courage to face it myself. I won't be able to have the DBS redone for my MSA. I was scheduled for July 10 (penciled in) but the reality is that the MSA is progressing, I'm not getting over what my body went through from the brain infection in January and if I can't even take a darvocette...I would never live through general anesthesia. Once again, I find myself back to that point of having to accept that this is as good as it is going to get and I'm going to have to deal with it. (Denial is so much more fun than reality)! Deborah aka Tenacity _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 Deborah- My mother was told to get DBS for her Parkinson's due to her inability to tolerate Sinemet. Will the DBS help the MSA also? Re: Rash and MSA Hi, I just got back from the doctor's office. I was told that my rash is because of my MSA, specifically that my immune system is not functioning correctly. I was advised not to even go in our hot tub (which I just got back into working order day before yesterday) or even a swimming pool because I am likely to have a reaction to the chemicals in it. He said that the MSA is causing a lot of the different major organ systems in my body to not work right. (Reality check from him because of my denial) He is a very kind doctor. He always spends a lot of time with me and answers any questions that I have. He looked truly sad when he told me that he doesn't have any magic answers. He ordered a number of blood tests and increased the dosing on 2 of my meds but is being very cautious with adding any additional medications until after the blood work comes back because he is afraid that I might get an even worse reaction. I don't know why, by now, I haven't figured out when I go to the doctor they are not going to give me some magic pill that will make me well. Because of the botched DBS and the resulting infections that I had earlier this year, they cannot even give me anything to " make me more comfortable. " Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on steroids for a week. I'm glad ya'll are here. I have to admit something to all of you so that I can have the courage to face it myself. I won't be able to have the DBS redone for my MSA. I was scheduled for July 10 (penciled in) but the reality is that the MSA is progressing, I'm not getting over what my body went through from the brain infection in January and if I can't even take a darvocette...I would never live through general anesthesia. Once again, I find myself back to that point of having to accept that this is as good as it is going to get and I'm going to have to deal with it. (Denial is so much more fun than reality)! Deborah aka Tenacity _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 For me, the answer was yes! It worked for the rigidity and pain that I was experiencing. I wound up having to have the DBS removed 16 days after surgery because I develeped a staph infection in my brain. But, while it was in and working....the difference was amazing. I was hoping, until today, to have the surgery re-done. Deborah Reply-To: shydrager To: " shydrager shydrager > Subject: RE: Re: Rash and MSA Date: Thu, 25 Apr 2002 16:06:33 -0400 A relative has Parkinson's plus MSA. Her doctor recommended DBS to help her inability to tolerate Sinemet for her Parkinson's. Does DBS help MSA at all? _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 For me, the answer was yes! It worked for the rigidity and pain that I was experiencing. I wound up having to have the DBS removed 16 days after surgery because I develeped a staph infection in my brain. But, while it was in and working....the difference was amazing. I was hoping, until today, to have the surgery re-done. Deborah Reply-To: shydrager To: " shydrager shydrager > Subject: RE: Re: Rash and MSA Date: Thu, 25 Apr 2002 16:06:33 -0400 A relative has Parkinson's plus MSA. Her doctor recommended DBS to help her inability to tolerate Sinemet for her Parkinson's. Does DBS help MSA at all? _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 For me, the answer was yes! It worked for the rigidity and pain that I was experiencing. I wound up having to have the DBS removed 16 days after surgery because I develeped a staph infection in my brain. But, while it was in and working....the difference was amazing. I was hoping, until today, to have the surgery re-done. Deborah Reply-To: shydrager To: " shydrager shydrager > Subject: RE: Re: Rash and MSA Date: Thu, 25 Apr 2002 16:06:33 -0400 A relative has Parkinson's plus MSA. Her doctor recommended DBS to help her inability to tolerate Sinemet for her Parkinson's. Does DBS help MSA at all? _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2002 Report Share Posted April 25, 2002 , Carol and Rob, et al, Yes, it looks to me more like something in the immunity-gone-haywire category. And, , at first they do look like little BB's. It's amazing that you have both types too, which suggests they are connected. But, as long as I'm in a complaining mood (see Allergan Blast), the following is the kind of medical care that makes you want to scream: Chuck went to the neurologist for checkup and showed her the spots. She sent him to the dermatologist. Dr. Five-Minute took two biopsies and sent them to the lab. Report was " arthropod bite " . End of story. No followup whatsoever from dermatologist or neurologist, and I think the path lab was WRONG. Will let you know what Mayo says, if anything. Bill, at least Osama can afford it. Barbara Woodford (Illinois, where we are blowing away also. Had roof shingles replaced last week. I might just go up there and throw my body over the newly placed ones today). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2002 Report Share Posted April 26, 2002 Dear Dear Deborah, I wish I lived closer to you so I could just run right over to see you and give you a hug and hold you until all the pain and anguish of this was gone from your life. I know that it is hard to accept the hand we are dealt in life and wonder why but one day we will find out why. You are one of the bravest women that I know that would want to go back through having surgery again after all that you went through the last time. Once I had read your story about your surgery and the incidences afterwards I was terrified and you said hey I will do it again! WOW! You have my total admiration! I will keep you in my prayers, dear Deborah. Keep the hope and prayers going also because God isn't done with us yet. He still has a lot more for us to do. One day in the far away future I bet you that I will be able to cloud hop farther than you and Rose and I will have a contest who can throw the cane we will never need anymore the farthest! Lots of love and gentle hugs and God's Blessings to bestow, Belinda > Hi, > > I just got back from the doctor's office. I was told that my rash is > because of my MSA, specifically that my immune system is not functioning > correctly. I was advised not to even go in our hot tub (which I just got > back into working order day before yesterday) or even a swimming pool > because I am likely to have a reaction to the chemicals in it. > > He said that the MSA is causing a lot of the different major organ > systems in my body to not work right. (Reality check from him because of my > denial) He is a very kind doctor. He always spends a lot of time with me > and answers any questions that I have. He looked truly sad when he told me > that he doesn't have any magic answers. He ordered a number of blood tests > and increased the dosing on 2 of my meds but is being very cautious with > adding any additional medications until after the blood work comes back > because he is afraid that I might get an even worse reaction. > > I don't know why, by now, I haven't figured out when I go to the doctor > they are not going to give me some magic pill that will make me well. > Because of the botched DBS and the resulting infections that I had earlier > this year, they cannot even give me anything to " make me more comfortable. " > Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on > steroids for a week. > > I'm glad ya'll are here. I have to admit something to all of you so that > I can have the courage to face it myself. I won't be able to have the DBS > redone for my MSA. I was scheduled for July 10 (penciled in) but the > reality is that the MSA is progressing, I'm not getting over what my body > went through from the brain infection in January and if I can't even take a > darvocette...I would never live through general anesthesia. Once again, I > find myself back to that point of having to accept that this is as good as > it is going to get and I'm going to have to deal with it. (Denial is so much > more fun than reality)! > > Deborah > aka Tenacity > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Belinda, Short term memory being what it may, I can't remember if I wrote you or not. I think I started a letter but am not sure if I sent it. Anyway, here I am writing again just in case I forgot to remember. If in fact I did remember what I think I forgot, just forget about it and all will be forgotten. LOL. I love that one. It is amazing. It is probably the first time I have gone to the doctor and received the " same " news and not gone in to a depression. It all feels different this time. I guess that is what happens eventually to everyone...acceptance. Educating myself was a good thing. I understand what is going on in my brain better these days. I worry now mostly for my caregiver/husband . He went and talked to the doctor yesterday. He was all choked up when he got home. The doctor answered his questions honestly and it hit him hard. I was able to broach the subject today about his getting on this list so as to find people that can understand more about what is happening to me than in the PD groups. One small step at a time. He signed up for this group today so be on the look out for him. He may lurk for a while but if you see a post from rsetzer2000 that is my . Thanks again for you email. You are a wonderful person. And yes, cloud hopping and cane tossing sounds like a good thing... lets just cane toss first. Deborah Reply-To: shydrager To: shydrager Subject: Re: Rash and MSA Date: Fri, 26 Apr 2002 18:22:16 -0000 Dear Dear Deborah, I wish I lived closer to you so I could just run right over to see you and give you a hug and hold you until all the pain and anguish of this was gone from your life. I know that it is hard to accept the hand we are dealt in life and wonder why but one day we will find out why. You are one of the bravest women that I know that would want to go back through having surgery again after all that you went through the last time. Once I had read your story about your surgery and the incidences afterwards I was terrified and you said hey I will do it again! WOW! You have my total admiration! I will keep you in my prayers, dear Deborah. Keep the hope and prayers going also because God isn't done with us yet. He still has a lot more for us to do. One day in the far away future I bet you that I will be able to cloud hop farther than you and Rose and I will have a contest who can throw the cane we will never need anymore the farthest! Lots of love and gentle hugs and God's Blessings to bestow, Belinda > Hi, > > I just got back from the doctor's office. I was told that my rash is > because of my MSA, specifically that my immune system is not functioning > correctly. I was advised not to even go in our hot tub (which I just got > back into working order day before yesterday) or even a swimming pool > because I am likely to have a reaction to the chemicals in it. > > He said that the MSA is causing a lot of the different major organ > systems in my body to not work right. (Reality check from him because of my > denial) He is a very kind doctor. He always spends a lot of time with me > and answers any questions that I have. He looked truly sad when he told me > that he doesn't have any magic answers. He ordered a number of blood tests > and increased the dosing on 2 of my meds but is being very cautious with > adding any additional medications until after the blood work comes back > because he is afraid that I might get an even worse reaction. > > I don't know why, by now, I haven't figured out when I go to the doctor > they are not going to give me some magic pill that will make me well. > Because of the botched DBS and the resulting infections that I had earlier > this year, they cannot even give me anything to " make me more comfortable. " > Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on > steroids for a week. > > I'm glad ya'll are here. I have to admit something to all of you so that > I can have the courage to face it myself. I won't be able to have the DBS > redone for my MSA. I was scheduled for July 10 (penciled in) but the > reality is that the MSA is progressing, I'm not getting over what my body > went through from the brain infection in January and if I can't even take a > darvocette...I would never live through general anesthesia. Once again, I > find myself back to that point of having to accept that this is as good as > it is going to get and I'm going to have to deal with it. (Denial is so much > more fun than reality)! > > Deborah > aka Tenacity > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Belinda, Short term memory being what it may, I can't remember if I wrote you or not. I think I started a letter but am not sure if I sent it. Anyway, here I am writing again just in case I forgot to remember. If in fact I did remember what I think I forgot, just forget about it and all will be forgotten. LOL. I love that one. It is amazing. It is probably the first time I have gone to the doctor and received the " same " news and not gone in to a depression. It all feels different this time. I guess that is what happens eventually to everyone...acceptance. Educating myself was a good thing. I understand what is going on in my brain better these days. I worry now mostly for my caregiver/husband . He went and talked to the doctor yesterday. He was all choked up when he got home. The doctor answered his questions honestly and it hit him hard. I was able to broach the subject today about his getting on this list so as to find people that can understand more about what is happening to me than in the PD groups. One small step at a time. He signed up for this group today so be on the look out for him. He may lurk for a while but if you see a post from rsetzer2000 that is my . Thanks again for you email. You are a wonderful person. And yes, cloud hopping and cane tossing sounds like a good thing... lets just cane toss first. Deborah Reply-To: shydrager To: shydrager Subject: Re: Rash and MSA Date: Fri, 26 Apr 2002 18:22:16 -0000 Dear Dear Deborah, I wish I lived closer to you so I could just run right over to see you and give you a hug and hold you until all the pain and anguish of this was gone from your life. I know that it is hard to accept the hand we are dealt in life and wonder why but one day we will find out why. You are one of the bravest women that I know that would want to go back through having surgery again after all that you went through the last time. Once I had read your story about your surgery and the incidences afterwards I was terrified and you said hey I will do it again! WOW! You have my total admiration! I will keep you in my prayers, dear Deborah. Keep the hope and prayers going also because God isn't done with us yet. He still has a lot more for us to do. One day in the far away future I bet you that I will be able to cloud hop farther than you and Rose and I will have a contest who can throw the cane we will never need anymore the farthest! Lots of love and gentle hugs and God's Blessings to bestow, Belinda > Hi, > > I just got back from the doctor's office. I was told that my rash is > because of my MSA, specifically that my immune system is not functioning > correctly. I was advised not to even go in our hot tub (which I just got > back into working order day before yesterday) or even a swimming pool > because I am likely to have a reaction to the chemicals in it. > > He said that the MSA is causing a lot of the different major organ > systems in my body to not work right. (Reality check from him because of my > denial) He is a very kind doctor. He always spends a lot of time with me > and answers any questions that I have. He looked truly sad when he told me > that he doesn't have any magic answers. He ordered a number of blood tests > and increased the dosing on 2 of my meds but is being very cautious with > adding any additional medications until after the blood work comes back > because he is afraid that I might get an even worse reaction. > > I don't know why, by now, I haven't figured out when I go to the doctor > they are not going to give me some magic pill that will make me well. > Because of the botched DBS and the resulting infections that I had earlier > this year, they cannot even give me anything to " make me more comfortable. " > Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on > steroids for a week. > > I'm glad ya'll are here. I have to admit something to all of you so that > I can have the courage to face it myself. I won't be able to have the DBS > redone for my MSA. I was scheduled for July 10 (penciled in) but the > reality is that the MSA is progressing, I'm not getting over what my body > went through from the brain infection in January and if I can't even take a > darvocette...I would never live through general anesthesia. Once again, I > find myself back to that point of having to accept that this is as good as > it is going to get and I'm going to have to deal with it. (Denial is so much > more fun than reality)! > > Deborah > aka Tenacity > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Belinda, Short term memory being what it may, I can't remember if I wrote you or not. I think I started a letter but am not sure if I sent it. Anyway, here I am writing again just in case I forgot to remember. If in fact I did remember what I think I forgot, just forget about it and all will be forgotten. LOL. I love that one. It is amazing. It is probably the first time I have gone to the doctor and received the " same " news and not gone in to a depression. It all feels different this time. I guess that is what happens eventually to everyone...acceptance. Educating myself was a good thing. I understand what is going on in my brain better these days. I worry now mostly for my caregiver/husband . He went and talked to the doctor yesterday. He was all choked up when he got home. The doctor answered his questions honestly and it hit him hard. I was able to broach the subject today about his getting on this list so as to find people that can understand more about what is happening to me than in the PD groups. One small step at a time. He signed up for this group today so be on the look out for him. He may lurk for a while but if you see a post from rsetzer2000 that is my . Thanks again for you email. You are a wonderful person. And yes, cloud hopping and cane tossing sounds like a good thing... lets just cane toss first. Deborah Reply-To: shydrager To: shydrager Subject: Re: Rash and MSA Date: Fri, 26 Apr 2002 18:22:16 -0000 Dear Dear Deborah, I wish I lived closer to you so I could just run right over to see you and give you a hug and hold you until all the pain and anguish of this was gone from your life. I know that it is hard to accept the hand we are dealt in life and wonder why but one day we will find out why. You are one of the bravest women that I know that would want to go back through having surgery again after all that you went through the last time. Once I had read your story about your surgery and the incidences afterwards I was terrified and you said hey I will do it again! WOW! You have my total admiration! I will keep you in my prayers, dear Deborah. Keep the hope and prayers going also because God isn't done with us yet. He still has a lot more for us to do. One day in the far away future I bet you that I will be able to cloud hop farther than you and Rose and I will have a contest who can throw the cane we will never need anymore the farthest! Lots of love and gentle hugs and God's Blessings to bestow, Belinda > Hi, > > I just got back from the doctor's office. I was told that my rash is > because of my MSA, specifically that my immune system is not functioning > correctly. I was advised not to even go in our hot tub (which I just got > back into working order day before yesterday) or even a swimming pool > because I am likely to have a reaction to the chemicals in it. > > He said that the MSA is causing a lot of the different major organ > systems in my body to not work right. (Reality check from him because of my > denial) He is a very kind doctor. He always spends a lot of time with me > and answers any questions that I have. He looked truly sad when he told me > that he doesn't have any magic answers. He ordered a number of blood tests > and increased the dosing on 2 of my meds but is being very cautious with > adding any additional medications until after the blood work comes back > because he is afraid that I might get an even worse reaction. > > I don't know why, by now, I haven't figured out when I go to the doctor > they are not going to give me some magic pill that will make me well. > Because of the botched DBS and the resulting infections that I had earlier > this year, they cannot even give me anything to " make me more comfortable. " > Taking 1 darvocette for the pain 3 weeks ago necessitated me going back on > steroids for a week. > > I'm glad ya'll are here. I have to admit something to all of you so that > I can have the courage to face it myself. I won't be able to have the DBS > redone for my MSA. I was scheduled for July 10 (penciled in) but the > reality is that the MSA is progressing, I'm not getting over what my body > went through from the brain infection in January and if I can't even take a > darvocette...I would never live through general anesthesia. Once again, I > find myself back to that point of having to accept that this is as good as > it is going to get and I'm going to have to deal with it. (Denial is so much > more fun than reality)! > > Deborah > aka Tenacity > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
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