Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 It has been awhile since I have posted anything. I have lipomyelocele with a 6 " tether before surgery and about 4 " after. I had spells of sudden weight gain as my TSC got worse. I gained over 125 lbs, 90 lbs I had never seen before. I gained in spurts of 30 to 50lbs in 4 to 6 weeks. I say all that to say this: My regular doctor atribited the gain to water / lack of exercise and so on. A regular endocrinologist said it was part of having TSC and it would be hard to lose weight. I train, not hang out in a gym, but train to compete in body building and power lifting. I did cardio, dieted and so on. finnally, as suggested by a freind, I went to one of those " hormone " " metabolism " anti-aging " doctors. He done a COMPLETE workup of test, not the few the other doctors did. He Tested everything. Sure enough I had problems that justified my symptoms. He is researching possible relation to TSC. Three of the major problems were below the bottom level Testostrone, B12, and Folate. My test level was 142.Normal levels are 245 being rock bottom low, 600 average and 1200 high top of scale. If you have a TSC and a weight problem I suggest you seek out one of these doctors or get a regular doctor who is willing to do ALL the Test for everything. Its been 2 1/2 weeks and I feel so much better. Been losing 3 lbs a week with out killing myself. I will keep you all up dated as I progress. Tom TSC from Agent Orange Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 I'm new to the group, but I just found out in Oct 07 that I have TCS. I was complaining to doctors for the last 10 years about symptoms, but nobody put anything together, until I demanded to see a neurologist. As for the weight gain, I find what you said to be very interesting. I put on some weight over university, but just attributed it to inactvity and over indulgence. I'd say it was close to 30lbs over 4 years. Then I went on Weight Watchers and lost that 30 and kept it off for a couple years, but then it slowly crept back on. I now am having a really difficult time trying to lose any weight. When I found out I had a lipoma on my spine, I wondered if it could contribute to any of the weight gain I noticed. The first Neurosurgeon I went to see also commented on my weight, and told me that I could shrink the size of the lipoma if I lost some weight. I really don't know how much 30lbs will make a difference, because I still had the same symptoms when I was smaller. I didn't really like this NS, she made me feel like I had done this to myself, so I'm getting a second opinion. Anyway, just wanted to say thanks for the tip, and I will definitely be checking it out with my doctor. -- In tetheredspinalcord , " tomsavell " wrote: > > It has been awhile since I have posted anything. I have lipomyelocele > with a 6 " tether before surgery and about 4 " after. I had > spells of sudden weight gain as my TSC got worse. I gained over 125 > lbs, 90 lbs I had never seen before. I gained in spurts of 30 to > 50lbs in 4 to 6 weeks. I say all that to say this: My regular doctor > atribited the gain to water / lack of exercise and so on. A regular > endocrinologist said it was part of having TSC and it would be hard > to lose weight. I train, not hang out in a gym, but train to compete > in body building and power lifting. I did cardio, dieted and so on. > finnally, as suggested by a freind, I went to one of > those " hormone " " metabolism " anti-aging " doctors. He done a COMPLETE > workup of test, not the few the other doctors did. He Tested > everything. Sure enough I had problems that justified my symptoms. He > is researching possible relation to TSC. Three of the major problems > were below the bottom level Testostrone, B12, and Folate. My test > level was 142.Normal levels are 245 being rock bottom low, 600 > average and 1200 high top of scale. If you have a TSC and a weight > problem I suggest you seek out one of these doctors or get a regular > doctor who is willing to do ALL the Test for everything. Its been 2 > 1/2 weeks and I feel so much better. Been losing 3 lbs a week with > out killing myself. I will keep you all up dated as I progress. > > Tom > TSC from Agent Orange > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2008 Report Share Posted May 3, 2008 Amber, Are you taking any medications? Some of the meds for neuropathy can cause weight gain (Lyrica and Depakote are anti-epileptic Rx's that are notorious for it as well as the tri-cyclic antidepressants, but just about any of them have weight gain as a side effect). There is also the problem of mobility. If you are not as mobile or active because of the symptoms from TCS (pain or loss of function), the losing gained weight can be more difficult. It is also easier to gain weight that was previously stable when activity decreases, in which case you have to either find a way to increase activity or decrease calories consumed. It can be a tricky balance for mobility impaired. Jenn From: tetheredspinalcord [mailto:tetheredspinalcord ] On Behalf Of ambercrant Sent: Monday, April 28, 2008 6:39 PM To: tetheredspinalcord Subject: Re: TSC and weight gain I'm new to the group, but I just found out in Oct 07 that I have TCS. I was complaining to doctors for the last 10 years about symptoms, but nobody put anything together, until I demanded to see a neurologist. As for the weight gain, I find what you said to be very interesting. I put on some weight over university, but just attributed it to inactvity and over indulgence. I'd say it was close to 30lbs over 4 years. Then I went on Weight Watchers and lost that 30 and kept it off for a couple years, but then it slowly crept back on. I now am having a really difficult time trying to lose any weight. When I found out I had a lipoma on my spine, I wondered if it could contribute to any of the weight gain I noticed. The first Neurosurgeon I went to see also commented on my weight, and told me that I could shrink the size of the lipoma if I lost some weight. I really don't know how much 30lbs will make a difference, because I still had the same symptoms when I was smaller. I didn't really like this NS, she made me feel like I had done this to myself, so I'm getting a second opinion. Anyway, just wanted to say thanks for the tip, and I will definitely be checking it out with my doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 I was taking Baclofen (10mg, 3x a day), but I stopped taking it because it was making feel really light headed. I agree with you, about being active, but having a lack of mobility. I used to be able to run and do a lot more vigorous activity, but I have severe weakness in my right leg which throws off my balance and it is difficult to do anything high impact. I was swimming with a coach not-competitively but very vigorous, but I had to stop because it was hurting my back. I'm going to try and pick up the swimming again, but at a more leisurely pace. I guess it is just difficult if you're used to being able to do things at a higher intensity, and now adjusting to a light intensity makes me feel like I'm not getting a workout at all. > Amber, > > Are you taking any medications? Some of the meds for neuropathy can cause > weight gain (Lyrica and Depakote are anti-epileptic Rx's that are notorious > for it as well as the tri-cyclic antidepressants, but just about any of them > have weight gain as a side effect). There is also the problem of mobility. > If you are not as mobile or active because of the symptoms from TCS (pain > or loss of function), the losing gained weight can be more difficult. It is > also easier to gain weight that was previously stable when activity > decreases, in which case you have to either find a way to increase activity > or decrease calories consumed. It can be a tricky balance for mobility > impaired. > > > > Jenn > > > > From: tetheredspinalcord > [mailto:tetheredspinalcord ] On Behalf Of ambercrant > Sent: Monday, April 28, 2008 6:39 PM > To: tetheredspinalcord > Subject: Re: TSC and weight gain > > > > I'm new to the group, but I just found out in Oct 07 that I have > TCS. I was complaining to doctors for the last 10 years about > symptoms, but nobody put anything together, until I demanded to see a > neurologist. > > As for the weight gain, I find what you said to be very interesting. > I put on some weight over university, but just attributed it to > inactvity and over indulgence. I'd say it was close to 30lbs over 4 > years. Then I went on Weight Watchers and lost that 30 and kept it > off for a couple years, but then it slowly crept back on. I now am > having a really difficult time trying to lose any weight. When I > found out I had a lipoma on my spine, I wondered if it could > contribute to any of the weight gain I noticed. > The first Neurosurgeon I went to see also commented on my weight, and > told me that I could shrink the size of the lipoma if I lost some > weight. I really don't know how much 30lbs will make a difference, > because I still had the same symptoms when I was smaller. I didn't > really like this NS, she made me feel like I had done this to myself, > so I'm getting a second opinion. > Anyway, just wanted to say thanks for the tip, and I will definitely > be checking it out with my doctor. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Hei When did you find out that you have TCS, I was 41 years old, and they found out when they where doing a surgery because of all the pain I had. Im on LYRICA,, and I am not especially active.. and maybe i have put on some extra kilos.. but i dont know if it is because of lyrica or my inefectivity... Please excuse my english... im from Norway.. Best regards Beate 2008/4/29 ambercrant : > > > > > I'm new to the group, but I just found out in Oct 07 that I have > TCS. I was complaining to doctors for the last 10 years about > symptoms, but nobody put anything together, until I demanded to see a > neurologist. > > As for the weight gain, I find what you said to be very interesting. > I put on some weight over university, but just attributed it to > inactvity and over indulgence. I'd say it was close to 30lbs over 4 > years. Then I went on Weight Watchers and lost that 30 and kept it > off for a couple years, but then it slowly crept back on. I now am > having a really difficult time trying to lose any weight. When I > found out I had a lipoma on my spine, I wondered if it could > contribute to any of the weight gain I noticed. > The first Neurosurgeon I went to see also commented on my weight, and > told me that I could shrink the size of the lipoma if I lost some > weight. I really don't know how much 30lbs will make a difference, > because I still had the same symptoms when I was smaller. I didn't > really like this NS, she made me feel like I had done this to myself, > so I'm getting a second opinion. > Anyway, just wanted to say thanks for the tip, and I will definitely > be checking it out with my doctor. > -- In tetheredspinalcord , " tomsavell " > wrote: > > > > It has been awhile since I have posted anything. I have > lipomyelocele > > with a 6 " tether before surgery and about 4 " after. I had > > spells of sudden weight gain as my TSC got worse. I gained over 125 > > lbs, 90 lbs I had never seen before. I gained in spurts of 30 to > > 50lbs in 4 to 6 weeks. I say all that to say this: My regular > doctor > > atribited the gain to water / lack of exercise and so on. A regular > > endocrinologist said it was part of having TSC and it would be hard > > to lose weight. I train, not hang out in a gym, but train to > compete > > in body building and power lifting. I did cardio, dieted and so on. > > finnally, as suggested by a freind, I went to one of > > those " hormone " " metabolism " anti-aging " doctors. He done a > COMPLETE > > workup of test, not the few the other doctors did. He Tested > > everything. Sure enough I had problems that justified my symptoms. > He > > is researching possible relation to TSC. Three of the major > problems > > were below the bottom level Testostrone, B12, and Folate. My test > > level was 142.Normal levels are 245 being rock bottom low, 600 > > average and 1200 high top of scale. If you have a TSC and a weight > > problem I suggest you seek out one of these doctors or get a > regular > > doctor who is willing to do ALL the Test for everything. Its been 2 > > 1/2 weeks and I feel so much better. Been losing 3 lbs a week with > > out killing myself. I will keep you all up dated as I progress. > > > > Tom > > TSC from Agent Orange > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Good Morning Beate, Mine was discovered when I was 37. I can tell you first hand that the Lyrica DOES put weight on you. No doubt. I was on Cymbalta and was not in good pain control so decided to add the Lyrica. My eating or activity has not changed but I have gained 15 pounds in 2 months. I feel " squishy " . I am going to pain management on Weds and see if we can try something different as I am still not in good pain control even on both of them. Beate Garmannslund wrote: Hei When did you find out that you have TCS, I was 41 years old, and they found out when they where doing a surgery because of all the pain I had. Im on LYRICA,, and I am not especially active.. and maybe i have put on some extra kilos.. but i dont know if it is because of lyrica or my inefectivity... Please excuse my english... im from Norway.. Best regards Beate 2008/4/29 ambercrant : > > > > > I'm new to the group, but I just found out in Oct 07 that I have > TCS. I was complaining to doctors for the last 10 years about > symptoms, but nobody put anything together, until I demanded to see a > neurologist. > > As for the weight gain, I find what you said to be very interesting. > I put on some weight over university, but just attributed it to > inactvity and over indulgence. I'd say it was close to 30lbs over 4 > years. Then I went on Weight Watchers and lost that 30 and kept it > off for a couple years, but then it slowly crept back on. I now am > having a really difficult time trying to lose any weight. When I > found out I had a lipoma on my spine, I wondered if it could > contribute to any of the weight gain I noticed. > The first Neurosurgeon I went to see also commented on my weight, and > told me that I could shrink the size of the lipoma if I lost some > weight. I really don't know how much 30lbs will make a difference, > because I still had the same symptoms when I was smaller. I didn't > really like this NS, she made me feel like I had done this to myself, > so I'm getting a second opinion. > Anyway, just wanted to say thanks for the tip, and I will definitely > be checking it out with my doctor. > -- In tetheredspinalcord , " tomsavell " > wrote: > > > > It has been awhile since I have posted anything. I have > lipomyelocele > > with a 6 " tether before surgery and about 4 " after. I had > > spells of sudden weight gain as my TSC got worse. I gained over 125 > > lbs, 90 lbs I had never seen before. I gained in spurts of 30 to > > 50lbs in 4 to 6 weeks. I say all that to say this: My regular > doctor > > atribited the gain to water / lack of exercise and so on. A regular > > endocrinologist said it was part of having TSC and it would be hard > > to lose weight. I train, not hang out in a gym, but train to > compete > > in body building and power lifting. I did cardio, dieted and so on. > > finnally, as suggested by a freind, I went to one of > > those " hormone " " metabolism " anti-aging " doctors. He done a > COMPLETE > > workup of test, not the few the other doctors did. He Tested > > everything. Sure enough I had problems that justified my symptoms. > He > > is researching possible relation to TSC. Three of the major > problems > > were below the bottom level Testostrone, B12, and Folate. My test > > level was 142.Normal levels are 245 being rock bottom low, 600 > > average and 1200 high top of scale. If you have a TSC and a weight > > problem I suggest you seek out one of these doctors or get a > regular > > doctor who is willing to do ALL the Test for everything. Its been 2 > > 1/2 weeks and I feel so much better. Been losing 3 lbs a week with > > out killing myself. I will keep you all up dated as I progress. > > > > Tom > > TSC from Agent Orange > > > > --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Hi Beate, I am now 43 years old and I have always known. I was born with a Spina Bifida Occulta and that was also known from birth. Nothing was done about it though. I have never had any problems until last year when the pain became chronic. Before that it was just short periods of lower back pain and that could be anything not specifically my TCS. I don't know anything on medication. I just take Ibuprofen and once in a while Tramadol if it gets too bad, but those I take only in the evening, because it makes me drowsy. Take care, Sophiene > > > > > > It has been awhile since I have posted anything. I have > > lipomyelocele > > > with a 6 " tether before surgery and about 4 " after. I had > > > spells of sudden weight gain as my TSC got worse. I gained over 125 > > > lbs, 90 lbs I had never seen before. I gained in spurts of 30 to > > > 50lbs in 4 to 6 weeks. I say all that to say this: My regular > > doctor > > > atribited the gain to water / lack of exercise and so on. A regular > > > endocrinologist said it was part of having TSC and it would be hard > > > to lose weight. I train, not hang out in a gym, but train to > > compete > > > in body building and power lifting. I did cardio, dieted and so on. > > > finnally, as suggested by a freind, I went to one of > > > those " hormone " " metabolism " anti-aging " doctors. He done a > > COMPLETE > > > workup of test, not the few the other doctors did. He Tested > > > everything. Sure enough I had problems that justified my symptoms. > > He > > > is researching possible relation to TSC. Three of the major > > problems > > > were below the bottom level Testostrone, B12, and Folate. My test > > > level was 142.Normal levels are 245 being rock bottom low, 600 > > > average and 1200 high top of scale. If you have a TSC and a weight > > > problem I suggest you seek out one of these doctors or get a > > regular > > > doctor who is willing to do ALL the Test for everything. Its been 2 > > > 1/2 weeks and I feel so much better. Been losing 3 lbs a week with > > > out killing myself. I will keep you all up dated as I progress. > > > > > > Tom > > > TSC from Agent Orange > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2008 Report Share Posted May 7, 2008 Hi Beate, I found out at age 29. I'm now 30, but I had been complaining about my bladder for the past 10 years. That was my major issue for slowing down my high impact activities, which has probably been a contributor to some extra pounds. I'm not on any medication right now, so I can't really blame that. I'm trying to shed some weight, but it is difficult, but I'm trying to stay active. -- In tetheredspinalcord , " Beate Garmannslund " wrote: > > Hei > > When did you find out that you have TCS, I was 41 years old, and they > found out when they where doing a surgery because of all the pain I > had. Im on LYRICA,, and I am not especially active.. and maybe i have > put on some extra kilos.. but i dont know if it is because of lyrica > or my inefectivity... > > Please excuse my english... im from Norway.. > > Best regards > Beate > > 2008/4/29 ambercrant : > > > > > > > > > > I'm new to the group, but I just found out in Oct 07 that I have > > TCS. I was complaining to doctors for the last 10 years about > > symptoms, but nobody put anything together, until I demanded to see a > > neurologist. > > > > As for the weight gain, I find what you said to be very interesting. > > I put on some weight over university, but just attributed it to > > inactvity and over indulgence. I'd say it was close to 30lbs over 4 > > years. Then I went on Weight Watchers and lost that 30 and kept it > > off for a couple years, but then it slowly crept back on. I now am > > having a really difficult time trying to lose any weight. When I > > found out I had a lipoma on my spine, I wondered if it could > > contribute to any of the weight gain I noticed. > > The first Neurosurgeon I went to see also commented on my weight, and > > told me that I could shrink the size of the lipoma if I lost some > > weight. I really don't know how much 30lbs will make a difference, > > because I still had the same symptoms when I was smaller. I didn't > > really like this NS, she made me feel like I had done this to myself, > > so I'm getting a second opinion. > > Anyway, just wanted to say thanks for the tip, and I will definitely > > be checking it out with my doctor. > > -- In tetheredspinalcord , " tomsavell " <tomsavell@> > > wrote: > > > > > > It has been awhile since I have posted anything. I have > > lipomyelocele > > > with a 6 " tether before surgery and about 4 " after. I had > > > spells of sudden weight gain as my TSC got worse. I gained over 125 > > > lbs, 90 lbs I had never seen before. I gained in spurts of 30 to > > > 50lbs in 4 to 6 weeks. I say all that to say this: My regular > > doctor > > > atribited the gain to water / lack of exercise and so on. A regular > > > endocrinologist said it was part of having TSC and it would be hard > > > to lose weight. I train, not hang out in a gym, but train to > > compete > > > in body building and power lifting. I did cardio, dieted and so on. > > > finnally, as suggested by a freind, I went to one of > > > those " hormone " " metabolism " anti-aging " doctors. He done a > > COMPLETE > > > workup of test, not the few the other doctors did. He Tested > > > everything. Sure enough I had problems that justified my symptoms. > > He > > > is researching possible relation to TSC. Three of the major > > problems > > > were below the bottom level Testostrone, B12, and Folate. My test > > > level was 142.Normal levels are 245 being rock bottom low, 600 > > > average and 1200 high top of scale. If you have a TSC and a weight > > > problem I suggest you seek out one of these doctors or get a > > regular > > > doctor who is willing to do ALL the Test for everything. Its been 2 > > > 1/2 weeks and I feel so much better. Been losing 3 lbs a week with > > > out killing myself. I will keep you all up dated as I progress. > > > > > > Tom > > > TSC from Agent Orange > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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