Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Love Tuesday Morning myself! I actually bought a stick blender today. I will not be wired, that I do know (thank God for small favors). Thanks for the heads up. I have not really thought about how I will look after the surgery. I guess I think I will be drugged so it doesn't matter, I suppose for me, it won't. Thanks so much Cammie. All of you guys have been great. > > > > Hello all! My name is and I am new to the group, in > fact, > > > this > > > > is the first time I have ever used a chat room type of > > environment > > > > before. I am 31, live in Florida, married for 8 years, no > kids. > > > I > > > > am schedule for surgery on August 18th for " Bilateral Sagittal > > > Split > > > > Osteotomies of the mandible with rigid fixation to advance the > > > > mandible and rotate " . > > > > > > > > I was wondering if anyone can tell me a little of what to > expect, > > > not > > > > what the doctor says, but from someone who has actually had the > > > > surgery. (How bad is the swelling and bruising, best ways to > > help > > > > with swelling and bruising, how long will you be out of > > > commission, > > > > work, when can I eat!!, etc.). > > > > > > > > I know this is the right thing to do, but now that it is fast > > > > approaching, I am starting to get that " Oh my God, what am I > > > doing " > > > > feeling. > > > > > > > > Thanks! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 Most people get a jolt with their first look in the mirror. And many times parents, spouses -- and especially small children -- can be dismayed by an extreme of swelling and or bruising. It goes away -- although the swelling can take a while. Depending on how much work they're doing, you may look pretty much the same (I do) or you may get a completely different look. Actually, I asked my surgeon whether he sees any difference -- a few of my close friends do, although I wonder whether a lot of that isn't just that the teeth are straight, I no longer have that overjet and overbite; he said, " Cammie, it was just a quarter of an inch! " (I had 5 mm advancement of the lower, with a bit of movement to the right.) Cammie > > > > > Hello all! My name is and I am new to the group, in > > fact, > > > > this > > > > > is the first time I have ever used a chat room type of > > > environment > > > > > before. I am 31, live in Florida, married for 8 years, no > > kids. > > > > I > > > > > am schedule for surgery on August 18th for " Bilateral > Sagittal > > > > Split > > > > > Osteotomies of the mandible with rigid fixation to advance > the > > > > > mandible and rotate " . > > > > > > > > > > I was wondering if anyone can tell me a little of what to > > expect, > > > > not > > > > > what the doctor says, but from someone who has actually had > the > > > > > surgery. (How bad is the swelling and bruising, best ways > to > > > help > > > > > with swelling and bruising, how long will you be out of > > > > commission, > > > > > work, when can I eat!!, etc.). > > > > > > > > > > I know this is the right thing to do, but now that it is > fast > > > > > approaching, I am starting to get that " Oh my God, what am I > > > > doing " > > > > > feeling. > > > > > > > > > > Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2004 Report Share Posted August 11, 2004 Most people get a jolt with their first look in the mirror. And many times parents, spouses -- and especially small children -- can be dismayed by an extreme of swelling and or bruising. It goes away -- although the swelling can take a while. Depending on how much work they're doing, you may look pretty much the same (I do) or you may get a completely different look. Actually, I asked my surgeon whether he sees any difference -- a few of my close friends do, although I wonder whether a lot of that isn't just that the teeth are straight, I no longer have that overjet and overbite; he said, " Cammie, it was just a quarter of an inch! " (I had 5 mm advancement of the lower, with a bit of movement to the right.) Cammie > > > > > Hello all! My name is and I am new to the group, in > > fact, > > > > this > > > > > is the first time I have ever used a chat room type of > > > environment > > > > > before. I am 31, live in Florida, married for 8 years, no > > kids. > > > > I > > > > > am schedule for surgery on August 18th for " Bilateral > Sagittal > > > > Split > > > > > Osteotomies of the mandible with rigid fixation to advance > the > > > > > mandible and rotate " . > > > > > > > > > > I was wondering if anyone can tell me a little of what to > > expect, > > > > not > > > > > what the doctor says, but from someone who has actually had > the > > > > > surgery. (How bad is the swelling and bruising, best ways > to > > > help > > > > > with swelling and bruising, how long will you be out of > > > > commission, > > > > > work, when can I eat!!, etc.). > > > > > > > > > > I know this is the right thing to do, but now that it is > fast > > > > > approaching, I am starting to get that " Oh my God, what am I > > > > doing " > > > > > feeling. > > > > > > > > > > Thanks! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 Dont have any advice on the childcare thing, But I am supposed to have upper/lower for an open bite in June 2005 also. I am meeting with a different surgeon next thursday to see what he says about it. > > Hi everyone. I have been reading your e-mails for the past few weeks > and have found them to be quite helpful. I am scheduled for surgery > in June of 2005 and was wondering how long you needed someone to > physically help you during the post-op period. I know that everyone > has different thresholds for pain and some heal at different rates. > I have a 3 year old and a 5 month old and I need to start planning > for child care post-op. My husband is going to stay home for the > first few days. Has anyone out there been crazy enough like me to go > through this with young kids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2004 Report Share Posted October 16, 2004 Dont have any advice on the childcare thing, But I am supposed to have upper/lower for an open bite in June 2005 also. I am meeting with a different surgeon next thursday to see what he says about it. > > Hi everyone. I have been reading your e-mails for the past few weeks > and have found them to be quite helpful. I am scheduled for surgery > in June of 2005 and was wondering how long you needed someone to > physically help you during the post-op period. I know that everyone > has different thresholds for pain and some heal at different rates. > I have a 3 year old and a 5 month old and I need to start planning > for child care post-op. My husband is going to stay home for the > first few days. Has anyone out there been crazy enough like me to go > through this with young kids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Hi Tammy, Welcome aboard. I appreciated the opportunity to speak with you last week. Just a thought. I would consider sending all of teh documentation regarding your children and you to Dr. Shoffner (unless Dr. N could arrange an impromptu biopsy at CCF). Dr. Shoffner has very little wait time at present for patients he deems appropriate for biopsy. If it could be done at CCF maybe it could be coupled with clinic visits there for your kids (provided Doug could go with to help with the kids). I know impromptu biopsies are not the general rule there, but it has been done in the past for others. Tammy dtmartin628@...> wrote: Hi, I would like to introduce myself and also ask for some direction from other adults living with Mito. My name is Tammy and I am 34 years old and my two children have been diagnosed with Mito. It was thought that they have a nDNA autosomal recessive defect, however I have had increasing health issues and on a whim the kids doctor did basic Mito labs-pyruvate, lactic acid etc and abnormalities were found indicating my issues may indeed be Mito. Which would mean that we do not have an autosomal recessive inheritance, but either autosomal dominant or mtDNA defect although no specific mutation has been found. They are on the full cocktail-Carnitor, CoEnzymeQ10, Liopic acid, Vit B1, B2, C, E, and Biotin. They have responded to treatment. My question comes with the muscle biopsy and wether to do it or not. I know for the kids fresh is best, etc. My PCP wants me to start the cocktail now, however I would like to do a biopsy first if there is potential information to be gained for me. If it is best to do the biopsy how do you go about getting this done in the adult world. My kids are patients of Dr Natowicz at Cleveland Clinic. They have not had the biopsy done because of multiple positive markers for Mito (they are presumed to have a defect in Oxidative phosphorylation and a secondary fatty acid defect elevations in all chains except medium chains) and our son was on the cocktail when we were sent to Cleveland and no one is willing to stop it for a biopsy. Our daughter was started immediately because she was very sick and her labs indicated Mito. My past medical history is somewhat complicated with CVS (thought to be caused by severe allergies), Chronic sinus infections with multiple surgeries because of polyps and tumors, headaches, asthma, GERD, fatigue, very complicated pregnancies, and most recently tremors, muscle weakness, PAIN and burning in muscles, extreme fatigue, difficulty with focusing vision, and memory 'cloudiness'. Was thought to have myasthenia gravis but blood testing was negative. Any thoughts and suggestions would be appreciated. Tammy --------------------------------- Yahoo! Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Tammy, In certain kinds of mito disorders that are normally autosomal recessive, pseudo dominant inheritance has been reported--in a few cases. Whether this could explain the apparent pattern of your family inheritance, I don't know. Has anyone considered screening your family for the more common mtDNA mutations? Perhaps not, since your children's disorder was thought to be of nuclear origin. But now that your history appears to be mito related, that option might be worth the expense and effort. Mutation screening is less invasive, and if it provided answers, a biopsy would not be necessary. Just a thought. Barbara > New to the group > > Hi, > > I would like to introduce myself and also ask for some direction from > other adults living with Mito. My name is Tammy and I am 34 years old > and my two children have been diagnosed with Mito. It was thought that > they have a nDNA autosomal recessive defect, however I have had > increasing health issues and on a whim the kids doctor did basic Mito > labs-pyruvate, lactic acid etc and abnormalities were found indicating my > issues may indeed be Mito. Which would mean that we do not have an > autosomal recessive inheritance, but either autosomal dominant or mtDNA defect > although no specific mutation has been found. They are on the full > cocktail-Carnitor, CoEnzymeQ10, Liopic acid, Vit B1, B2, C, E, and Biotin. > They have responded to treatment. My question comes with the muscle > biopsy and wether to do it or not. I know for the kids fresh is best, > etc. My PCP wants me to start the cocktail now, however I would like to > do a biopsy first if there is potential information to be gained for > me. > If it is best to do the biopsy how do you go about getting this done > in the adult world. My kids are patients of Dr Natowicz at Cleveland > Clinic. They have not had the biopsy done because of multiple positive > markers for Mito (they are presumed to have a defect in Oxidative > phosphorylation and a secondary fatty acid defect elevations in all chains > except medium chains) and our son was on the cocktail when we were sent > to Cleveland and no one is willing to stop it for a biopsy. Our > daughter was started immediately because she was very sick and her labs > indicated Mito. My past medical history is somewhat complicated with CVS > (thought to be caused by severe allergies), Chronic sinus infections with > multiple surgeries because of polyps and tumors, headaches, asthma, > GERD, fatigue, very complicated pregnancies, and most recently tremors, > muscle weakness, PAIN and burning in muscles, extreme fatigue, difficulty > with focusing vision, and memory 'cloudiness'. Was thought to have > myasthenia gravis but blood testing was negative. > > Any thoughts and suggestions would be appreciated. > Tammy > > > > > --------------------------------- > Yahoo! Music Unlimited - Access over 1 million songs. Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 before having your children put through the muscle biopsy I would (and did) do it myself. I am partial to dr. Shoffner as he did my dna and muscle biopsy work. Where do you live? I do know that there is a certain belief in not taking supplements etc before the muscle biopsy so you need to discuss this carefully. good luck to you and your children. Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Tammy Welcome to the group. It sounds like you need to get some help. Joanne has suggested sending your records to Dr. Shoffner which is a good idea. I had my fresh biopsy there. If you do this and call, ask about going on the suppliments (especially if your children have responded well) if the biopsy is going to be more than say 6 weeks out. laurie > Hi, > > I would like to introduce myself and also ask for some direction from > other adults living with Mito. My name is Tammy and I am 34 years old > and my two children have been diagnosed with Mito. It was thought that > they have a nDNA autosomal recessive defect, however I have had > increasing health issues and on a whim the kids doctor did basic Mito > labs-pyruvate, lactic acid etc and abnormalities were found indicating my > issues may indeed be Mito. Which would mean that we do not have an > autosomal recessive inheritance, but either autosomal dominant or mtDNA defect > although no specific mutation has been found. They are on the full > cocktail-Carnitor, CoEnzymeQ10, Liopic acid, Vit B1, B2, C, E, and Biotin. > They have responded to treatment. My question comes with the muscle > biopsy and wether to do it or not. I know for the kids fresh is best, > etc. My PCP wants me to start the cocktail now, however I would like to > do a biopsy first if there is potential information to be gained for > me. > If it is best to do the biopsy how do you go about getting this done > in the adult world. My kids are patients of Dr Natowicz at Cleveland > Clinic. They have not had the biopsy done because of multiple positive > markers for Mito (they are presumed to have a defect in Oxidative > phosphorylation and a secondary fatty acid defect elevations in all chains > except medium chains) and our son was on the cocktail when we were sent > to Cleveland and no one is willing to stop it for a biopsy. Our > daughter was started immediately because she was very sick and her labs > indicated Mito. My past medical history is somewhat complicated with CVS > (thought to be caused by severe allergies), Chronic sinus infections with > multiple surgeries because of polyps and tumors, headaches, asthma, > GERD, fatigue, very complicated pregnancies, and most recently tremors, > muscle weakness, PAIN and burning in muscles, extreme fatigue, difficulty > with focusing vision, and memory 'cloudiness'. Was thought to have > myasthenia gravis but blood testing was negative. > > Any thoughts and suggestions would be appreciated. > Tammy > > > > > --------------------------------- > Yahoo! Music Unlimited - Access over 1 million songs. Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 --- Tammy I want to welcome you to the group. I have found it to be very helpful with a good group of people. As far as muscle biopsy goes the suggestion regarding Dr Shoeffner is a good one. With your childrens history, I do not think you will have any problems getting in. IF you do a muscle biopsy maybe your children can avoid it. Dawn Anich In , Tammy wrote: > > Hi, > > I would like to introduce myself and also ask for some direction from > other adults living with Mito. My name is Tammy and I am 34 years old > and my two children have been diagnosed with Mito. It was thought that > they have a nDNA autosomal recessive defect, however I have had > increasing health issues and on a whim the kids doctor did basic Mito > labs-pyruvate, lactic acid etc and abnormalities were found indicating my > issues may indeed be Mito. Which would mean that we do not have an > autosomal recessive inheritance, but either autosomal dominant or mtDNA defect > although no specific mutation has been found. They are on the full > cocktail-Carnitor, CoEnzymeQ10, Liopic acid, Vit B1, B2, C, E, and Biotin. > They have responded to treatment. My question comes with the muscle > biopsy and wether to do it or not. I know for the kids fresh is best, > etc. My PCP wants me to start the cocktail now, however I would like to > do a biopsy first if there is potential information to be gained for > me. > If it is best to do the biopsy how do you go about getting this done > in the adult world. My kids are patients of Dr Natowicz at Cleveland > Clinic. They have not had the biopsy done because of multiple positive > markers for Mito (they are presumed to have a defect in Oxidative > phosphorylation and a secondary fatty acid defect elevations in all chains > except medium chains) and our son was on the cocktail when we were sent > to Cleveland and no one is willing to stop it for a biopsy. Our > daughter was started immediately because she was very sick and her labs > indicated Mito. My past medical history is somewhat complicated with CVS > (thought to be caused by severe allergies), Chronic sinus infections with > multiple surgeries because of polyps and tumors, headaches, asthma, > GERD, fatigue, very complicated pregnancies, and most recently tremors, > muscle weakness, PAIN and burning in muscles, extreme fatigue, difficulty > with focusing vision, and memory 'cloudiness'. Was thought to have > myasthenia gravis but blood testing was negative. > > Any thoughts and suggestions would be appreciated. > Tammy > > > > > --------------------------------- > Yahoo! Music Unlimited - Access over 1 million songs. Try it free. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Welcome to the Group Tammy. I agree with Dawn. Ann > > > > Hi, > > > > I would like to introduce myself and also ask for some direction > from > > other adults living with Mito. My name is Tammy and I am 34 years > old > > and my two children have been diagnosed with Mito. It was thought > that > > they have a nDNA autosomal recessive defect, however I have had > > increasing health issues and on a whim the kids doctor did basic > Mito > > labs-pyruvate, lactic acid etc and abnormalities were found > indicating my > > issues may indeed be Mito. Which would mean that we do not have > an > > autosomal recessive inheritance, but either autosomal dominant or > mtDNA defect > > although no specific mutation has been found. They are on the > full > > cocktail-Carnitor, CoEnzymeQ10, Liopic acid, Vit B1, B2, C, E, and > Biotin. > > They have responded to treatment. My question comes with the > muscle > > biopsy and wether to do it or not. I know for the kids fresh is > best, > > etc. My PCP wants me to start the cocktail now, however I would > like to > > do a biopsy first if there is potential information to be gained > for > > me. > > If it is best to do the biopsy how do you go about getting this > done > > in the adult world. My kids are patients of Dr Natowicz at > Cleveland > > Clinic. They have not had the biopsy done because of multiple > positive > > markers for Mito (they are presumed to have a defect in Oxidative > > phosphorylation and a secondary fatty acid defect elevations in > all chains > > except medium chains) and our son was on the cocktail when we were > sent > > to Cleveland and no one is willing to stop it for a biopsy. Our > > daughter was started immediately because she was very sick and her > labs > > indicated Mito. My past medical history is somewhat complicated > with CVS > > (thought to be caused by severe allergies), Chronic sinus > infections with > > multiple surgeries because of polyps and tumors, headaches, > asthma, > > GERD, fatigue, very complicated pregnancies, and most recently > tremors, > > muscle weakness, PAIN and burning in muscles, extreme fatigue, > difficulty > > with focusing vision, and memory 'cloudiness'. Was thought to have > > myasthenia gravis but blood testing was negative. > > > > Any thoughts and suggestions would be appreciated. > > Tammy > > > > > > > > > > --------------------------------- > > Yahoo! Music Unlimited - Access over 1 million songs. Try it free. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Judy,Welcome to our group. I went through several doctors and a couple of D & C's (b/c it HAD to be a woman thing) before I was diagnosed in 1994. Mine came back with a vengeance in 2004. You've come to the right place. Blessings,Beckyjjbri06 wrote: Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My doctor did not diagnose me until just 5 years ago. It unfortunately happened right after I gave birth to my baby. I suffered tremendously and did not know what was happening to me going from one emergency room to another and one doctor after another. I just had a major operation and my neurosarcoidosis came back with a vegengeance. I broke down and cried today like a baby and finally got the nerve to join a support group. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Judy, I am so sorry you have this awful disease, but glad you found us. We have over 400 members here -- some have had this disease for many years and some have had it just for a short time.....but we have many knowledgeable people here who are willing to help all they can. Please feel free to ask any thing you need help on and someone will get back to you. However, ALL of us are sick, so it might be a day or two before you get any answers to your questions. Also, we have archives that you can search for help and files that offer lots of good info. Again, welcome to the list -- we all just wish we could have met you under better circumstances......:-) Hugs, Darlene NS Co-Owner/Moderator Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My doctor did not diagnose me until just 5 years ago. It unfortunately happened right after I gave birth to my baby. I suffered tremendously and did not know what was happening to me going from one emergency room to another and one doctor after another. I just had a major operation and my neurosarcoidosis came back with a vegengeance. I broke down and cried today like a baby and finally got the nerve to join a support group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Judy, welcome to the group. And good for you for seeking help. God knows I wouldn't have my sanity now if it hadn't been for this group. We let it all hang out here so feel free to totally be yourself. I've asked for prayer one time, sworn at my doc the next, and told about family and how stressed I am the next. We have all had our share of tears, too. We really do understand. hugs S.jjbri06 wrote: Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My doctor did not diagnose me until just 5 years ago. It unfortunately happened right after I gave birth to my baby. I suffered tremendously and did not know what was happening to me going from one emergency room to another and one doctor after another. I just had a major operation and my neurosarcoidosis came back with a vegengeance. I broke down and cried today like a baby and finally got the nerve to join a support group. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Judy welcome you have found more then a support group here, we are like family, supporting each other with education, love and prayers if you want them. Are Moderators are excellent and very informative, and each and every member has something special they bring to this group. So let us know what we can do for you. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of jjbri06 Sent: Friday, January 05, 2007 12:12 AM To: Neurosarcoidosis Subject: New to the group Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My doctor did not diagnose me until just 5 years ago. It unfortunately happened right after I gave birth to my baby. I suffered tremendously and did not know what was happening to me going from one emergency room to another and one doctor after another. I just had a major operation and my neurosarcoidosis came back with a vegengeance. I broke down and cried today like a baby and finally got the nerve to join a support group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My > doctor did not diagnose me until just 5 years ago. It unfortunately > happened right after I gave birth to my baby. I suffered tremendously > and did not know what was happening to me going from one emergency > room to another and one doctor after another. I just had a major > operation and my neurosarcoidosis came back with a vegengeance. I > broke down and cried today like a baby and finally got the nerve to > join a support group. > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 --- Thankyou for your kindness and the information. I'm glad to be on this site with people that obviously understand what I'm going through and I now see that a lot of people actually suffer from this terrible disease. In Neurosarcoidosis , " Darlene Arney " wrote: > > Hi Judy, > I am so sorry you have this awful disease, but glad you found us. > We have over 400 members here -- some have had this disease for > many years and some have had it just for a short time.....but we have > many knowledgeable people here who are willing to help all they can. > Please feel free to ask any thing you need help on and someone will > get back to you. However, ALL of us are sick, so it might be a day > or two before you get any answers to your questions. Also, we have > archives that you can search for help and files that offer lots of good > info. > > Again, welcome to the list -- we all just wish we could have met > you under better circumstances......:-) > > Hugs, > Darlene > NS Co-Owner/Moderator > > > > > > > > > Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My > > doctor did not diagnose me until just 5 years ago. It unfortunately > > happened right after I gave birth to my baby. I suffered tremendously > > and did not know what was happening to me going from one emergency > > room to another and one doctor after another. I just had a major > > operation and my neurosarcoidosis came back with a vegengeance. I > > broke down and cried today like a baby and finally got the nerve to > > join a support group. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 --Thankyou Marla. This does seem like a very supportive family group and I look forward to being in this group for a very long time. I wish everyone all the best and will pray everyday for everyone on this site. - In Neurosarcoidosis , " Marla Bramer " wrote: > > Judy welcome you have found more then a support group here, we are like > family, supporting each other with education, love and prayers if you want > them. Are Moderators are excellent and very informative, and each and every > member has something special they bring to this group. > > So let us know what we can do for you. > > Marla > > > > _____ > > From: Neurosarcoidosis > [mailto:Neurosarcoidosis ] On Behalf Of jjbri06 > Sent: Friday, January 05, 2007 12:12 AM > To: Neurosarcoidosis > Subject: New to the group > > > > Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My > doctor did not diagnose me until just 5 years ago. It unfortunately > happened right after I gave birth to my baby. I suffered tremendously > and did not know what was happening to me going from one emergency > room to another and one doctor after another. I just had a major > operation and my neurosarcoidosis came back with a vegengeance. I > broke down and cried today like a baby and finally got the nerve to > join a support group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Hi Judy,Really glad to hear that you have a found a sarcoid specialist. I take prednisone 20mg a day (been on varying doses over 2 1/2 yrs) and cellcept 1500mg/day (off it for a few days b/c have had a cold) among many other meds. I had a total hysterectomy too (in 1999) and had a tough time getting over the general anesthetic. Getting ready to have a pacemaker/AICD put in for cardiac sarcoid...nurse left a message late yesterday for me to call them (cardiologist) on Monday. My surgery was cx once by the doctor b/c of bad labs and then once by me. My sarcoid specialist is at s Hopkins in Baltimore. Blessings,Beckyjjbri06 wrote: Hi, my name is Judy and I have had neurosarcoidosis for 10 years. My > doctor did not diagnose me until just 5 years ago. It unfortunately > happened right after I gave birth to my baby. I suffered tremendously > and did not know what was happening to me going from one emergency > room to another and one doctor after another. I just had a major > operation and my neurosarcoidosis came back with a vegengeance. I > broke down and cried today like a baby and finally got the nerve to > join a support group. > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hi, I was diagnosed with Neurosarcoidosis last March. My initinal symptoms were double vision and a tightning around the abdomen that felt like a tourniquet that would tighten now and then. I also lost use of my legs, having " charlie-horse " like pains, and my hands are numb from wrist to finger tips. I'm presently on Prednisone, Methotrexate, and Neurontin. The meds have cured my double vision, and legs, and my hands are getting better, but the tighting of my abdomen is as bad as when the whole thing started. Has anyone had similier symptoms? Is there any hope that these abdomen pains will go away? When the pain kicks in it restricts my walking. Pain killers help, but I don't want to live on them nor take them at work (when I return). Thank you in advance for any imput. regards, Rick Long Island, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Hi Rick. My sarc is only in the brain & spine but I also have the "girdle" feeling around my chest. They did not find sarc when they did the lung flush thing but I've had the tightness for the last 2 years. I'm on Cytoxan & Neurontin. And a hundred other pills it seems like! LOL grannylunatic@... Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Hi, They didn't do a "lung flush thing" on me, they found mine with a biopsy to the lymph glands in my chest. My brain is clear, but they suspect my spine. Sorry to hear that you've had the "girdle" feeling for two years, you have me wondering now. Doctors here can't give me a straight answer about it, they say I could have it for life or it might go away. I have good and bad days with it, it really bothers me after a large meal (which I try to avoid). I'm a case study for my hospital, I'm following their recommendations in faith, but it might come a time for a second opinion, I hate the thought of living the rest of my life like this. best regards, Rick wrote: Hi Rick. My sarc is only in the brain & spine but I also have the "girdle" feeling around my chest. They did not find sarc when they did the lung flush thing but I've had the tightness for the last 2 years. I'm on Cytoxan & Neurontin. And a hundred other pills it seems like! LOL grannylunatic (AT) yahoo (DOT) com Looking for earth-friendly autos? Browse Top Cars by "Green Rating" at Yahoo! Autos' Green Center. Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Mine could also be inactivity. My last day of work was in November, 2004. One good thing, I'm older than pantyhose so I remember the days of a girdle when you wore a dress or skirts! LOL I had my cvp shunt replaced last summer when it failed. You would have thought one of the rocket scientists would have checked the clog in it! grannylunatic@... Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Rick, Sorry to hear of your problems. As far as the tightening of the abdomen (that is how I feel it) I have found that a muscle relaxer will help. I used to think it was like a panic attack, but then I realized it was actually a physical tightening of the muscles. I use ativan and it also help relieve the tightness in my thighs. Well, welcome to the group. You will find a lot of support here, plus a few laughs. Our moderators are great and have a wealth of information for you plus we have a few nuts too who will bring a smile to your face. Terri G. > > Hi, > > I was diagnosed with Neurosarcoidosis last March. My initinal > symptoms were double vision and a tightning around the abdomen that > felt like a tourniquet that would tighten now and then. I also lost > use of my legs, having " charlie-horse " like pains, and my hands are > numb from wrist to finger tips. > I'm presently on Prednisone, Methotrexate, and Neurontin. The meds > have cured my double vision, and legs, and my hands are getting > better, but the tighting of my abdomen is as bad as when the whole > thing started. > Has anyone had similier symptoms? Is there any hope that these > abdomen pains will go away? When the pain kicks in it restricts my > walking. Pain killers help, but I don't want to live on them nor > take them at work (when I return). > > Thank you in advance for any imput. > regards, > Rick > Long Island, NY > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2007 Report Share Posted June 12, 2007 Hi Terri, Thanks for the welcome. The tightening I feel is like I have a rope tied around me with two large horses pulling in opposite directions. When it gets tight Percocet, Darvoet or Vicoden don't even help. I'm trying my hardest to get back to work but stairs on a bad day do me in. I have no clue how I got this. Nice hearing from you. Rickmosaicgirl1 wrote: Rick,Sorry to hear of your problems. As far as the tightening of the abdomen(that is how I feel it) I have found that a muscle relaxer will help. Iused to think it was like a panic attack, but then I realized it wasactually a physical tightening of the muscles. I use ativan and it alsohelp relieve the tightness in my thighs.Well, welcome to the group. You will find a lot of support here, plus afew laughs. Our moderators are great and have a wealth of informationfor you plus we have a few nuts too who will bring a smile to your face.Terri G.>> Hi,>> I was diagnosed with Neurosarcoidosis last March. My initinal> symptoms were double vision and a tightning around the abdomen that> felt like a tourniquet that would tighten now and then. I also lost> use of my legs, having "charlie-horse" like pains, and my hands are> numb from wrist to finger tips.> I'm presently on Prednisone, Methotrexate, and Neurontin. The meds> have cured my double vision, and legs, and my hands are getting> better, but the tighting of my abdomen is as bad as when the whole> thing started.> Has anyone had similier symptoms? Is there any hope that these> abdomen pains will go away? When the pain kicks in it restricts my> walking. Pain killers help, but I don't want to live on them nor> take them at work (when I return).>> Thank you in advance for any imput.> regards,> Rick> Long Island, NY> Get the Yahoo! toolbar and be alerted to new email wherever you're surfing. Quote Link to comment Share on other sites More sharing options...
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