Guest guest Posted September 4, 2010 Report Share Posted September 4, 2010 Connie, all these posts & you never said how your lungs are. Did you finally get the congestion cleared up? Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 We're having a little bit bigger problem right now that my neuro, and electrophysiologist are trying to figure out. My heart nerves have decided they will no longer obey my pacer except when they want too. I have a setting of 76 bpm . I am 100% paced, it has been dropping below as far as in the 40's and then the pacer goes wild, then it will go too fast. They really cut up if I eat and don't have enough Lyrica on board. The neuro has just recently told me I have sensory neuropathy, demylinating nerves, and is going to do a nerve biopsy. My legs would feel like they were in hot grease, I couldn't stand my clothes, or sheets, or anything to touch them, or they would sting like I had them in a fire ant bed. (I use alot of Lidocaine cream, plus meds). The only thing I can find that fits all the things the doctor has told me and the symptoms I have been having in my legs, arms, and heart is something called CIDP-Chronic Inflammatory Dimylenating Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to take (75 in the am, 150 at night) causes the heart to obey better than it was. It still overrides, and has a weird misbeat. This isn't too cool if it decides to ignore the Lyrica, my heart does not hold it's own. Before the pacer I have a recorded heartrate of 1, and as high as 258. I now take only 10 mg of pred a day and Chorloquine.for my breathing. I could not completely wean off the pred because my adrenal gland will not go back to working. 10 mg is as low as I can go. I found an amazing pulmonologist Dr Fulton. She has been great, ouhhh tried methotrexate before chorloquine. I was one of the 1% that the skin came off my face like a 2nd degree burn, I had to go to the ER and get solumedrol to stop it from spreading any further. Looked like someone hit me in the face with the flat end of a hot 2 egg cast iron frying pan. Needless to say, going to work with my face like that was fun///not. I won't lie and say it doesn't concern me a bit, I have things to do. I am ready to go, but not in a hurry. I have also had someone in a hospital accidently turn my pacer off thinking my heart was strong enough to hold. I instantaneously fell into the abyss. Scared the puddin out of her, soon as she jerked the magnet off I came too instantly. You don't get any warning, so if something happens I won't be able to call for help. I have a Great God, and good doctors; and thankfully if it is CIDP there is a treatment plan. I just hope they find it's name soon, that is half the battle. Don't mean to go on and on, but I can't talk very much to my family. One of those 10 things that sarc teaches us.....my family and friends can be so scared by a disease. I know I was gone for a while, but I have been sick alot since around the end of February. No excuse I know, you all have been sick too. Thanks for listening, I appreciate you all.......Connie To: neurosarcoidosis Sent: Sat, September 4, 2010 5:34:11 PMSubject: Connie Connie, all these posts & you never said how your lungs are. Did you finally get the congestion cleared up? Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) We Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 WOW Connie, and you are still working? Don't know how you do it. I'm sorry you are dealing with so much. I know we all have to do what we have to do, I truly wish I could of stayed at work, but my worse symptoms are my legs, they just don't seem to want to work very well, I can't walk very far, or very fast, some days balance not so good. And I have major memory issues. Well as a Labor and delivery Nurse, I had to move and think fast, and it wasn't happening, that was 7 years ago already. The heart thing is scary, My husband had an MI in Oct. surgery for a stint, only one, but now on a ton of meds. I said welcome to my world, at least he can still work. Are you close to being able to not work? What an inspiration you are:) hang in there. Blessings,Marla We're having a little bit bigger problem right now that my neuro, and electrophysiologist are trying to figure out. My heart nerves have decided they will no longer obey my pacer except when they want too. I have a setting of 76 bpm . I am 100% paced, it has been dropping below as far as in the 40's and then the pacer goes wild, then it will go too fast. They really cut up if I eat and don't have enough Lyrica on board. The neuro has just recently told me I have sensory neuropathy, demylinating nerves, and is going to do a nerve biopsy. My legs would feel like they were in hot grease, I couldn't stand my clothes, or sheets, or anything to touch them, or they would sting like I had them in a fire ant bed. (I use alot of Lidocaine cream, plus meds). The only thing I can find that fits all the things the doctor has told me and the symptoms I have been having in my legs, arms, and heart is something called CIDP-Chronic Inflammatory Dimylenating Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to take (75 in the am, 150 at night) causes the heart to obey better than it was. It still overrides, and has a weird misbeat. This isn't too cool if it decides to ignore the Lyrica, my heart does not hold it's own. Before the pacer I have a recorded heartrate of 1, and as high as 258. I now take only 10 mg of pred a day and Chorloquine.for my breathing. I could not completely wean off the pred because my adrenal gland will not go back to working. 10 mg is as low as I can go. I found an amazing pulmonologist Dr Fulton. She has been great, ouhhh tried methotrexate before chorloquine. I was one of the 1% that the skin came off my face like a 2nd degree burn, I had to go to the ER and get solumedrol to stop it from spreading any further. Looked like someone hit me in the face with the flat end of a hot 2 egg cast iron frying pan. Needless to say, going to work with my face like that was fun///not. I won't lie and say it doesn't concern me a bit, I have things to do. I am ready to go, but not in a hurry. I have also had someone in a hospital accidently turn my pacer off thinking my heart was strong enough to hold. I instantaneously fell into the abyss. Scared the puddin out of her, soon as she jerked the magnet off I came too instantly. You don't get any warning, so if something happens I won't be able to call for help. I have a Great God, and good doctors; and thankfully if it is CIDP there is a treatment plan. I just hope they find it's name soon, that is half the battle. Don't mean to go on and on, but I can't talk very much to my family. One of those 10 things that sarc teaches us.....my family and friends can be so scared by a disease. I know I was gone for a while, but I have been sick alot since around the end of February. No excuse I know, you all have been sick too. Thanks for listening, I appreciate you all.......Connie To: neurosarcoidosis Sent: Sat, September 4, 2010 5:34:11 PMSubject: Connie Connie, all these posts & you never said how your lungs are. Did you finally get the congestion cleared up? Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) We Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2010 Report Share Posted September 5, 2010 Connie said: Don't mean to go on and on, but I can't talk very much to my family. One of those 10 things that sarc teaches us.....my family and friends can be so scared by a disease. I know I was gone for a while, but I have been sick alot since around the end of February. No excuse I know, you all have been sick too. Thanks for listening, I appreciate you all.......Connie Connie, don't apologize for telling us what's been going on--that's why we're here. And you don't need an excuse for not posting. I've had to take time away even when I didn't have anything medical really going on, and I've never had the severe problems with my heart & lungs that you have had. Gee whiz, you kind of need those organs to work, don't you? So ignore that little guilt gremlin that pops into your mind, because you have given so much to this group, from your knowledge of the disability system to your unique personal perspective, AND your sense of humor. We also appreciate you! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: conaugusta@...Date: Sat, 4 Sep 2010 23:19:19 -0700Subject: Re: Connie We're having a little bit bigger problem right now that my neuro, and electrophysiologist are trying to figure out. My heart nerves have decided they will no longer obey my pacer except when they want too. I have a setting of 76 bpm . I am 100% paced, it has been dropping below as far as in the 40's and then the pacer goes wild, then it will go too fast. They really cut up if I eat and don't have enough Lyrica on board. The neuro has just recently told me I have sensory neuropathy, demylinating nerves, and is going to do a nerve biopsy. My legs would feel like they were in hot grease, I couldn't stand my clothes, or sheets, or anything to touch them, or they would sting like I had them in a fire ant bed. (I use alot of Lidocaine cream, plus meds). The only thing I can find that fits all the things the doctor has told me and the symptoms I have been having in my legs, arms, and heart is something called CIDP-Chronic Inflammatory Dimylenating Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to take (75 in the am, 150 at night) causes the heart to obey better than it was. It still overrides, and has a weird misbeat. This isn't too cool if it decides to ignore the Lyrica, my heart does not hold it's own. Before the pacer I have a recorded heartrate of 1, and as high as 258. I now take only 10 mg of pred a day and Chorloquine.for my breathing. I could not completely wean off the pred because my adrenal gland will not go back to working. 10 mg is as low as I can go. I found an amazing pulmonologist Dr Fulton. She has been great, ouhhh tried methotrexate before chorloquine. I was one of the 1% that the skin came off my face like a 2nd degree burn, I had to go to the ER and get solumedrol to stop it from spreading any further. Looked like someone hit me in the face with the flat end of a hot 2 egg cast iron frying pan. Needless to say, going to work with my face like that was fun///not. I won't lie and say it doesn't concern me a bit, I have things to do. I am ready to go, but not in a hurry. I have also had someone in a hospital accidently turn my pacer off thinking my heart was strong enough to hold. I instantaneously fell into the abyss. Scared the puddin out of her, soon as she jerked the magnet off I came too instantly. You don't get any warning, so if something happens I won't be able to call for help. I have a Great God, and good doctors; and thankfully if it is CIDP there is a treatment plan. I just hope they find it's name soon, that is half the battle. Don't mean to go on and on, but I can't talk very much to my family. One of those 10 things that sarc teaches us.....my family and friends can be so scared by a disease. I know I was gone for a while, but I have been sick alot since around the end of February. No excuse I know, you all have been sick too. Thanks for listening, I appreciate you all.......Connie To: neurosarcoidosis Sent: Sat, September 4, 2010 5:34:11 PMSubject: Connie Connie, all these posts & you never said how your lungs are. Did you finally get the congestion cleared up? Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) We Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Marla you are a doll. I am no hero, I just can't stop. There is no savings for me to be off work, and I am just like all of you my insurance is more important than my income. If it weren't for my boss, I would not have a job. It is so frustrating, I am used to working high volume, high stress jobs, and doing it well. Now I have to have all kind of reminders in books and on my bulletin board so I can do my job, at least I guess I am what the neuro-psychologist said...good at compensating. (By the way I had to practice repeatedly before I could remember that word even though it has been part of my vocabulary forever) I also live a little in that far away country next to de-nial. I keep thinking that "maybe this time they will be able to get it under control enough to buy me a little more time". But hey, I am so very thankful I have a job, a wonderful Christian boss, and FMLA They can't shoot me for having to be off so much for sickness and dr's appts. I am buond and determined to come completely up to speed, but I have a sneaking hunch that isn't going to happen. I have got to start setting aside some money somehow so I can COBRA while a decision could be made. I do have a little help in there, I have over 20 yrs with the state, so there is a pretty good chance I can medically retire. I have been praying that God will show me the right time is. To: Neurosarcoidosis Sent: Sun, September 5, 2010 1:05:53 PMSubject: Re: Connie WOW Connie, and you are still working? Don't know how you do it. I'm sorry you are dealing with so much. I know we all have to do what we have to do, I truly wish I could of stayed at work, but my worse symptoms are my legs, they just don't seem to want to work very well, I can't walk very far, or very fast, some days balance not so good. And I have major memory issues. Well as a Labor and delivery Nurse, I had to move and think fast, and it wasn't happening, that was 7 years ago already. The heart thing is scary, My husband had an MI in Oct. surgery for a stint, only one, but now on a ton of meds. I said welcome to my world, at least he can still work. Are you close to being able to not work? What an inspiration you are:) hang in there. Blessings,Marla We're having a little bit bigger problem right now that my neuro, and electrophysiologist are trying to figure out. My heart nerves have decided they will no longer obey my pacer except when they want too. I have a setting of 76 bpm . I am 100% paced, it has been dropping below as far as in the 40's and then the pacer goes wild, then it will go too fast. They really cut up if I eat and don't have enough Lyrica on board. The neuro has just recently told me I have sensory neuropathy, demylinating nerves, and is going to do a nerve biopsy. My legs would feel like they were in hot grease, I couldn't stand my clothes, or sheets, or anything to touch them, or they would sting like I had them in a fire ant bed. (I use alot of Lidocaine cream, plus meds). The only thing I can find that fits all the things the doctor has told me and the symptoms I have been having in my legs, arms, and heart is something called CIDP-Chronic Inflammatory Dimylenating Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to take (75 in the am, 150 at night) causes the heart to obey better than it was. It still overrides, and has a weird misbeat. This isn't too cool if it decides to ignore the Lyrica, my heart does not hold it's own. Before the pacer I have a recorded heartrate of 1, and as high as 258. I now take only 10 mg of pred a day and Chorloquine.for my breathing. I could not completely wean off the pred because my adrenal gland will not go back to working. 10 mg is as low as I can go. I found an amazing pulmonologist Dr Fulton. She has been great, ouhhh tried methotrexate before chorloquine. I was one of the 1% that the skin came off my face like a 2nd degree burn, I had to go to the ER and get solumedrol to stop it from spreading any further. Looked like someone hit me in the face with the flat end of a hot 2 egg cast iron frying pan. Needless to say, going to work with my face like that was fun///not. I won't lie and say it doesn't concern me a bit, I have things to do. I am ready to go, but not in a hurry. I have also had someone in a hospital accidently turn my pacer off thinking my heart was strong enough to hold. I instantaneously fell into the abyss. Scared the puddin out of her, soon as she jerked the magnet off I came too instantly. You don't get any warning, so if something happens I won't be able to call for help. I have a Great God, and good doctors; and thankfully if it is CIDP there is a treatment plan. I just hope they find it's name soon, that is half the battle. Don't mean to go on and on, but I can't talk very much to my family. One of those 10 things that sarc teaches us.....my family and friends can be so scared by a disease. I know I was gone for a while, but I have been sick alot since around the end of February. No excuse I know, you all have been sick too. Thanks for listening, I appreciate you all.......Connie To: neurosarcoidosis Sent: Sat, September 4, 2010 5:34:11 PMSubject: Connie Connie, all these posts & you never said how your lungs are. Did you finally get the congestion cleared up? Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) We Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Thanks so much Rose, I felt guilty time I sent it for spouting off, but I felt better when I could put into words what keeps going over and over in my head. I appreciate you all more than you will ever know To: neurosarcoidosis Sent: Sun, September 5, 2010 5:44:38 PMSubject: RE: Connie Connie said: Don't mean to go on and on, but I can't talk very much to my family. One of those 10 things that sarc teaches us.....my family and friends can be so scared by a disease. I know I was gone for a while, but I have been sick alot since around the end of February. No excuse I know, you all have been sick too. Thanks for listening, I appreciate you all.......ConnieConnie, don't apologize for telling us what's been going on--that's why we're here. And you don't need an excuse for not posting. I've had to take time away even when I didn't have anything medical really going on, and I've never had the severe problems with my heart & lungs that you have had. Gee whiz, you kind of need those organs to work, don't you? So ignore that little guilt gremlin that pops into your mind, because you have given so much to this group, from your knowledge of the disability system to your unique personal perspective, AND your sense of humor. We also appreciate you! Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: conaugusta@...Date: Sat, 4 Sep 2010 23:19:19 -0700Subject: Re: Connie We're having a little bit bigger problem right now that my neuro, and electrophysiologist are trying to figure out. My heart nerves have decided they will no longer obey my pacer except when they want too. I have a setting of 76 bpm . I am 100% paced, it has been dropping below as far as in the 40's and then the pacer goes wild, then it will go too fast. They really cut up if I eat and don't have enough Lyrica on board. The neuro has just recently told me I have sensory neuropathy, demylinating nerves, and is going to do a nerve biopsy. My legs would feel like they were in hot grease, I couldn't stand my clothes, or sheets, or anything to touch them, or they would sting like I had them in a fire ant bed. (I use alot of Lidocaine cream, plus meds). The only thing I can find that fits all the things the doctor has told me and the symptoms I have been having in my legs, arms, and heart is something called CIDP-Chronic Inflammatory Dimylenating Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to take (75 in the am, 150 at night) causes the heart to obey better than it was. It still overrides, and has a weird misbeat. This isn't too cool if it decides to ignore the Lyrica, my heart does not hold it's own. Before the pacer I have a recorded heartrate of 1, and as high as 258. I now take only 10 mg of pred a day and Chorloquine.for my breathing. I could not completely wean off the pred because my adrenal gland will not go back to working. 10 mg is as low as I can go. I found an amazing pulmonologist Dr Fulton. She has been great, ouhhh tried methotrexate before chorloquine. I was one of the 1% that the skin came off my face like a 2nd degree burn, I had to go to the ER and get solumedrol to stop it from spreading any further. Looked like someone hit me in the face with the flat end of a hot 2 egg cast iron frying pan. Needless to say, going to work with my face like that was fun///not. I won't lie and say it doesn't concern me a bit, I have things to do. I am ready to go, but not in a hurry. I have also had someone in a hospital accidently turn my pacer off thinking my heart was strong enough to hold. I instantaneously fell into the abyss. Scared the puddin out of her, soon as she jerked the magnet off I came too instantly. You don't get any warning, so if something happens I won't be able to call for help. I have a Great God, and good doctors; and thankfully if it is CIDP there is a treatment plan. I just hope they find it's name soon, that is half the battle. Don't mean to go on and on, but I can't talk very much to my family. One of those 10 things that sarc teaches us.....my family and friends can be so scared by a disease. I know I was gone for a while, but I have been sick alot since around the end of February. No excuse I know, you all have been sick too. Thanks for listening, I appreciate you all.......Connie To: neurosarcoidosis Sent: Sat, September 4, 2010 5:34:11 PMSubject: Connie Connie, all these posts & you never said how your lungs are. Did you finally get the congestion cleared up? Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) We Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Connie, You are an inspiration to us all! I was diagnosed in February so am relatively new to this, but having this group at least lets me know that I am not crazy with all of the weird things going on with me. I have heart flutters occasionally that none of my Drs. have really addressed and the nerve issues as well. Back in April, when I mentioned a numb patch over my tailbone going into my hips/legs the Dr. looked at me oddly and dismissed it...or at least did not discuss it in any detail with me. I now have a patch on the outside of my right knee that burns when I touch it...previously had one on my ankle. Most of my symptoms seem to show up on my right side...except headaches are on the left, which I supposed makes some kind of sense. Thankfully many of them do seem to go away after a time, so I try to stay positive...but hearing your story makes me aware that I do need to stay vigilant if my symptoms get worse. Anyway, I wanted to let you know that I feel so bad for all you are going through, and still you find the energy to reach out to help the rest of us! You are AMAZING! Deb Z. Michigan > > On Sun, Sep 5, 2010 at 12:19 AM, Connie Griffis wrote: > > We're having a little bit bigger problem right now that my neuro, and > > electrophysiologist are trying to figure out. My heart nerves have decided > > they will no longer obey my pacer except when they want too. I have a > > setting of 76 bpm . I am 100% paced, it has been dropping below as far as > > in the 40's and then the pacer goes wild, then it will go too fast. They > > really cut up if I eat and don't have enough Lyrica on board. The neuro has > > just recently told me I have sensory neuropathy, demylinating nerves, and is > > going to do a nerve biopsy. My legs would feel like they were in hot grease, > > I couldn't stand my clothes, or sheets, or anything to touch them, or they > > would sting like I had them in a fire ant bed. (I use alot of Lidocaine > > cream, plus meds). The only thing I can find that fits all the things the > > doctor has told me and the symptoms I have been having in my legs, arms, and > > heart is something called CIDP-Chronic Inflammatory Dimylenating > > Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to > > take (75 in the am, 150 at night) causes the heart to obey better than it > > was. It still overrides, and has a weird misbeat. This isn't too cool if > > it decides to ignore the Lyrica, my heart does not hold it's own. Before > > the pacer I have a recorded heartrate of 1, and as high as 258. > > > > I now take only 10 mg of pred a day and Chorloquine.for my breathing. I > > could not completely wean off the pred because my adrenal gland will not go > > back to working. 10 mg is as low as I can go. I found an amazing > > pulmonologist Dr Fulton. She has been great, ouhhh tried > > methotrexate before chorloquine. I was one of the 1% that the skin came off > > my face like a 2nd degree burn, I had to go to the ER and get solumedrol to > > stop it from spreading any further. Looked like someone hit me in the face > > with the flat end of a hot 2 egg cast iron frying pan. Needless to say, > > going to work with my face like that was fun///not. > > > > I won't lie and say it doesn't concern me a bit, I have things to do. I am > > ready to go, but not in a hurry. I have also had someone in a hospital > > accidently turn my pacer off thinking my heart was strong enough to hold. I > > instantaneously fell into the abyss. Scared the puddin out of her, soon as > > she jerked the magnet off I came too instantly. You don't get any warning, > > so if something happens I won't be able to call for help. I have a Great > > God, and good doctors; and thankfully if it is CIDP there is a treatment > > plan. I just hope they find it's name soon, that is half the battle. > > > > Don't mean to go on and on, but I can't talk very much to my family. One > > of those 10 things that sarc teaches us.....my family and friends can be so > > scared by a disease. > > > > I know I was gone for a while, but I have been sick alot since around the > > end of February. No excuse I know, you all have been sick too. Thanks for > > listening, I appreciate you all.......Connie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2010 Report Share Posted September 6, 2010 Simply an amazing and an inspiring person. I love and envy your strength, Connie. You give me the will to go ahead and fight this monster.. Thank you for being you. Jackie Re: Connie > Connie, > > You are an inspiration to us all! > > I was diagnosed in February so am relatively new to this, but having this > group at least lets me know that I am not crazy with all of the weird > things going on with me. I have heart flutters occasionally that none of > my Drs. have really addressed and the nerve issues as well. Back in April, > when I mentioned a numb patch over my tailbone going into my hips/legs the > Dr. looked at me oddly and dismissed it...or at least did not discuss it > in any detail with me. I now have a patch on the outside of my right knee > that burns when I touch it...previously had one on my ankle. Most of my > symptoms seem to show up on my right side...except headaches are on the > left, which I supposed makes some kind of sense. Thankfully many of them > do seem to go away after a time, so I try to stay positive...but hearing > your story makes me aware that I do need to stay vigilant if my symptoms > get worse. > > Anyway, I wanted to let you know that I feel so bad for all you are going > through, and still you find the energy to reach out to help the rest of > us! You are AMAZING! > > Deb Z. > Michigan > >> >> On Sun, Sep 5, 2010 at 12:19 AM, Connie Griffis wrote: > >> > We're having a little bit bigger problem right now that my neuro, and >> > electrophysiologist are trying to figure out. My heart nerves have >> > decided >> > they will no longer obey my pacer except when they want too. I have a >> > setting of 76 bpm . I am 100% paced, it has been dropping below as far >> > as >> > in the 40's and then the pacer goes wild, then it will go too fast. >> > They >> > really cut up if I eat and don't have enough Lyrica on board. The >> > neuro has >> > just recently told me I have sensory neuropathy, demylinating nerves, >> > and is >> > going to do a nerve biopsy. My legs would feel like they were in hot >> > grease, >> > I couldn't stand my clothes, or sheets, or anything to touch them, or >> > they >> > would sting like I had them in a fire ant bed. (I use alot of >> > Lidocaine >> > cream, plus meds). The only thing I can find that fits all the things >> > the >> > doctor has told me and the symptoms I have been having in my legs, >> > arms, and >> > heart is something called CIDP-Chronic Inflammatory Dimylenating >> > Polyneuropathy. The odd thing is that Lyrica in higher doses than I >> > used to >> > take (75 in the am, 150 at night) causes the heart to obey better than >> > it >> > was. It still overrides, and has a weird misbeat. This isn't too >> > cool if >> > it decides to ignore the Lyrica, my heart does not hold it's own. >> > Before >> > the pacer I have a recorded heartrate of 1, and as high as 258. >> > >> > I now take only 10 mg of pred a day and Chorloquine.for my breathing. >> > I >> > could not completely wean off the pred because my adrenal gland will >> > not go >> > back to working. 10 mg is as low as I can go. I found an amazing >> > pulmonologist Dr Fulton. She has been great, ouhhh tried >> > methotrexate before chorloquine. I was one of the 1% that the skin >> > came off >> > my face like a 2nd degree burn, I had to go to the ER and get >> > solumedrol to >> > stop it from spreading any further. Looked like someone hit me in the >> > face >> > with the flat end of a hot 2 egg cast iron frying pan. Needless to >> > say, >> > going to work with my face like that was fun///not. >> > >> > I won't lie and say it doesn't concern me a bit, I have things to do. >> > I am >> > ready to go, but not in a hurry. I have also had someone in a hospital >> > accidently turn my pacer off thinking my heart was strong enough to >> > hold. I >> > instantaneously fell into the abyss. Scared the puddin out of her, >> > soon as >> > she jerked the magnet off I came too instantly. You don't get any >> > warning, >> > so if something happens I won't be able to call for help. I have a >> > Great >> > God, and good doctors; and thankfully if it is CIDP there is a >> > treatment >> > plan. I just hope they find it's name soon, that is half the battle. >> > >> > Don't mean to go on and on, but I can't talk very much to my family. >> > One >> > of those 10 things that sarc teaches us.....my family and friends can >> > be so >> > scared by a disease. >> > >> > I know I was gone for a while, but I have been sick alot since around >> > the >> > end of February. No excuse I know, you all have been sick too. Thanks >> > for >> > listening, I appreciate you all.......Connie >> > > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members 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 September 8, 2010 Report Share Posted September 8, 2010 Thank you, but I am nothing special. Like the rest of the group, I have been able to plow through because of my Savior. Pls don't let them put you off if you are having palpations or numbness. I started with the heart sarc at age 41, I believe Solberg is also a cardiac sarc and also has a pacer (Sorry , my memory is awful at times) With this strange disease, you always have to be on guard, and if a doctor dismisses you, dismiss him. Doctors are not omniscence, you pay them. I like the old saying, why do you think they call their business a practice. I now have a fine team of doctors, and they have ears. Please take care, and I hope and pray that you will be one of the ones who experiences a remission. Be very careful, you are the only one who lives in that body 24/7, and you are the only one that knows when something goes wrong. Thank you again for your kindness, everyone on this site; including you are AMAZING!! To: Neurosarcoidosis Sent: Mon, September 6, 2010 8:26:52 AMSubject: Re: Connie Connie,You are an inspiration to us all! I was diagnosed in February so am relatively new to this, but having this group at least lets me know that I am not crazy with all of the weird things going on with me. I have heart flutters occasionally that none of my Drs. have really addressed and the nerve issues as well. Back in April, when I mentioned a numb patch over my tailbone going into my hips/legs the Dr. looked at me oddly and dismissed it...or at least did not discuss it in any detail with me. I now have a patch on the outside of my right knee that burns when I touch it...previously had one on my ankle. Most of my symptoms seem to show up on my right side...except headaches are on the left, which I supposed makes some kind of sense. Thankfully many of them do seem to go away after a time, so I try to stay positive...but hearing your story makes me aware that I do need to stay vigilant if my symptoms get worse. Anyway, I wanted to let you know that I feel so bad for all you are going through, and still you find the energy to reach out to help the rest of us! You are AMAZING! Deb Z.Michigan> > On Sun, Sep 5, 2010 at 12:19 AM, Connie Griffis wrote:> > We're having a little bit bigger problem right now that my neuro, and> > electrophysiologist are trying to figure out. My heart nerves have decided> > they will no longer obey my pacer except when they want too. I have a> > setting of 76 bpm . I am 100% paced, it has been dropping below as far as> > in the 40's and then the pacer goes wild, then it will go too fast. They> > really cut up if I eat and don't have enough Lyrica on board. The neuro has> > just recently told me I have sensory neuropathy, demylinating nerves, and is> > going to do a nerve biopsy. My legs would feel like they were in hot grease,> > I couldn't stand my clothes, or sheets, or anything to touch them, or they> > would sting like I had them in a fire ant bed. (I use alot of Lidocaine> > cream, plus meds). The only thing I can find that fits all the things the> > doctor has told me and the symptoms I have been having in my legs, arms, and> > heart is something called CIDP-Chronic Inflammatory Dimylenating> > Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to> > take (75 in the am, 150 at night) causes the heart to obey better than it> > was. It still overrides, and has a weird misbeat. This isn't too cool if> > it decides to ignore the Lyrica, my heart does not hold it's own. Before> > the pacer I have a recorded heartrate of 1, and as high as 258.> >> > I now take only 10 mg of pred a day and Chorloquine.for my breathing. I> > could not completely wean off the pred because my adrenal gland will not go> > back to working. 10 mg is as low as I can go. I found an amazing> > pulmonologist Dr Fulton. She has been great, ouhhh tried> > methotrexate before chorloquine. I was one of the 1% that the skin came off> > my face like a 2nd degree burn, I had to go to the ER and get solumedrol to> > stop it from spreading any further. Looked like someone hit me in the face> > with the flat end of a hot 2 egg cast iron frying pan. Needless to say,> > going to work with my face like that was fun///not.> >> > I won't lie and say it doesn't concern me a bit, I have things to do. I am> > ready to go, but not in a hurry. I have also had someone in a hospital> > accidently turn my pacer off thinking my heart was strong enough to hold. I> > instantaneously fell into the abyss. Scared the puddin out of her, soon as> > she jerked the magnet off I came too instantly. You don't get any warning,> > so if something happens I won't be able to call for help. I have a Great> > God, and good doctors; and thankfully if it is CIDP there is a treatment> > plan. I just hope they find it's name soon, that is half the battle.> >> > Don't mean to go on and on, but I can't talk very much to my family. One> > of those 10 things that sarc teaches us.....my family and friends can be so> > scared by a disease.> >> > I know I was gone for a while, but I have been sick alot since around the> > end of February. No excuse I know, you all have been sick too. Thanks for> > listening, I appreciate you all.......Connie> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2010 Report Share Posted September 8, 2010 I feel the exact same way about all of you. You have been such an amazing help, comfort, and a world of knowledge for me. I could never say thank you enough for all you all have done for me. FYI:I went to the neurologist today (had to go to the electrophysiologist yesterday because the heart got out of hand). I guess he is leaning toward the CIDP even though I have to have more test, he is starting me on IV Immunoglobulin therapy as soon as he clears everything with my insurance. He knows whats going on in the legs, but he wants to test my arms and see if the nerves are dymylinating there too. We'll figure it out, and I'll be at it again soon. I love you all, Connie If you don't mind, I miss and I think of him often. Is he ok, I know he was going through some horrible ordeals. Now that's a person to admire, in a wheelchair and still laughing and telling jokes. To: Neurosarcoidosis Sent: Mon, September 6, 2010 5:45:59 PMSubject: Re: Re: Connie Simply an amazing and an inspiring person. I love and envy your strength, Connie. You give me the will to go ahead and fight this monster.. Thank you for being you.Jackie Re: Connie> Connie,>> You are an inspiration to us all!>> I was diagnosed in February so am relatively new to this, but having this > group at least lets me know that I am not crazy with all of the weird > things going on with me. I have heart flutters occasionally that none of > my Drs. have really addressed and the nerve issues as well. Back in April, > when I mentioned a numb patch over my tailbone going into my hips/legs the > Dr. looked at me oddly and dismissed it...or at least did not discuss it > in any detail with me. I now have a patch on the outside of my right knee > that burns when I touch it...previously had one on my ankle. Most of my > symptoms seem to show up on my right side...except headaches are on the > left, which I supposed makes some kind of sense. Thankfully many of them > do seem to go away after a time, so I try to stay positive...but hearing > your story makes me aware that I do need to stay vigilant if my symptoms > get worse.>> Anyway, I wanted to let you know that I feel so bad for all you are going > through, and still you find the energy to reach out to help the rest of > us! You are AMAZING!>> Deb Z.> Michigan>>>>> On Sun, Sep 5, 2010 at 12:19 AM, Connie Griffis wrote:>>> > We're having a little bit bigger problem right now that my neuro, and>> > electrophysiologist are trying to figure out. My heart nerves have >> > decided>> > they will no longer obey my pacer except when they want too. I have a>> > setting of 76 bpm . I am 100% paced, it has been dropping below as far >> > as>> > in the 40's and then the pacer goes wild, then it will go too fast. >> > They>> > really cut up if I eat and don't have enough Lyrica on board. The >> > neuro has>> > just recently told me I have sensory neuropathy, demylinating nerves, >> > and is>> > going to do a nerve biopsy. My legs would feel like they were in hot >> > grease,>> > I couldn't stand my clothes, or sheets, or anything to touch them, or >> > they>> > would sting like I had them in a fire ant bed. (I use alot of >> > Lidocaine>> > cream, plus meds). The only thing I can find that fits all the things >> > the>> > doctor has told me and the symptoms I have been having in my legs, >> > arms, and>> > heart is something called CIDP-Chronic Inflammatory Dimylenating>> > Polyneuropathy. The odd thing is that Lyrica in higher doses than I >> > used to>> > take (75 in the am, 150 at night) causes the heart to obey better than >> > it>> > was. It still overrides, and has a weird misbeat. This isn't too >> > cool if>> > it decides to ignore the Lyrica, my heart does not hold it's own. >> > Before>> > the pacer I have a recorded heartrate of 1, and as high as 258.>> >>> > I now take only 10 mg of pred a day and Chorloquine.for my breathing. >> > I>> > could not completely wean off the pred because my adrenal gland will >> > not go>> > back to working. 10 mg is as low as I can go. I found an amazing>> > pulmonologist Dr Fulton. She has been great, ouhhh tried>> > methotrexate before chorloquine. I was one of the 1% that the skin >> > came off>> > my face like a 2nd degree burn, I had to go to the ER and get >> > solumedrol to>> > stop it from spreading any further. Looked like someone hit me in the >> > face>> > with the flat end of a hot 2 egg cast iron frying pan. Needless to >> > say,>> > going to work with my face like that was fun///not.>> >>> > I won't lie and say it doesn't concern me a bit, I have things to do. >> > I am>> > ready to go, but not in a hurry. I have also had someone in a hospital>> > accidently turn my pacer off thinking my heart was strong enough to >> > hold. I>> > instantaneously fell into the abyss. Scared the puddin out of her, >> > soon as>> > she jerked the magnet off I came too instantly. You don't get any >> > warning,>> > so if something happens I won't be able to call for help. I have a >> > Great>> > God, and good doctors; and thankfully if it is CIDP there is a >> > treatment>> > plan. I just hope they find it's name soon, that is half the battle.>> >>> > Don't mean to go on and on, but I can't talk very much to my family. >> > One>> > of those 10 things that sarc teaches us.....my family and friends can >> > be so>> > scared by a disease.>> >>> > I know I was gone for a while, but I have been sick alot since around >> > the>> > end of February. No excuse I know, you all have been sick too. Thanks >> > for>> > listening, I appreciate you all.......Connie>> >>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages>> Members 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 September 9, 2010 Report Share Posted September 9, 2010 Mar Mommer is the one with cardiac sarc(if i remember correctly). not me....so far.Life may not always be the party we hoped for, but while we're here we might as well dance!> > We're having a little bit bigger problem right now that my neuro, and> > electrophysiologist are trying to figure out. My heart nerves have decided> > they will no longer obey my pacer except when they want too. I have a> > setting of 76 bpm . I am 100% paced, it has been dropping below as far as> > in the 40's and then the pacer goes wild, then it will go too fast. They> > really cut up if I eat and don't have enough Lyrica on board. The neuro has> > just recently told me I have sensory neuropathy, demylinating nerves, and is> > going to do a nerve biopsy. My legs would feel like they were in hot grease,> > I couldn't stand my clothes, or sheets, or anything to touch them, or they> > would sting like I had them in a fire ant bed. (I use alot of Lidocaine> > cream, plus meds). The only thing I can find that fits all the things the> > doctor has told me and the symptoms I have been having in my legs, arms, and> > heart is something called CIDP-Chronic Inflammatory Dimylenating> > Polyneuropathy. The odd thing is that Lyrica in higher doses than I used to> > take (75 in the am, 150 at night) causes the heart to obey better than it> > was. It still overrides, and has a weird misbeat. This isn't too cool if> > it decides to ignore the Lyrica, my heart does not hold it's own. Before> > the pacer I have a recorded heartrate of 1, and as high as 258.> >> > I now take only 10 mg of pred a day and Chorloquine.for my breathing. I> > could not completely wean off the pred because my adrenal gland will not go> > back to working. 10 mg is as low as I can go. I found an amazing> > pulmonologist Dr Fulton. She has been great, ouhhh tried> > methotrexate before chorloquine. I was one of the 1% that the skin came off> > my face like a 2nd degree burn, I had to go to the ER and get solumedrol to> > stop it from spreading any further. Looked like someone hit me in the face> > with the flat end of a hot 2 egg cast iron frying pan. Needless to say,> > going to work with my face like that was fun///not.> >> > I won't lie and say it doesn't concern me a bit, I have things to do. I am> > ready to go, but not in a hurry. I have also had someone in a hospital> > accidently turn my pacer off thinking my heart was strong enough to hold. I> > instantaneously fell into the abyss. Scared the puddin out of her, soon as> > she jerked the magnet off I came too instantly. You don't get any warning,> > so if something happens I won't be able to call for help. I have a Great> > God, and good doctors; and thankfully if it is CIDP there is a treatment> > plan. I just hope they find it's name soon, that is half the battle.> >> > Don't mean to go on and on, but I can't talk very much to my family. One> > of those 10 things that sarc teaches us.....my family and friends can be so> > scared by a disease.> >> > I know I was gone for a while, but I have been sick alot since around the> > end of February. No excuse I know, you all have been sick too. Thanks for> > listening, I appreciate you all.......Connie> > Quote Link to comment Share on other sites More sharing options...
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