Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Steve and Mark My mito doctors have told me that lipomas are more common in people with mito than in the general population. I have hundreds of them. I had one biopsied to make sure it was a lipomas and it was on the center of my back. I hope you get some answers Mark. laurie > > Reply-To: > Date: Wed, 27 Oct 2004 01:22:22 -0400 > To: > > Subject: Re: spine and mito > > > Mark > > I have Multiple Symmetrical Lipomatosis (characterized by very large > upper-truncal lipomas) which is one very rare type of mito disease (which of > course is itself rather rare). One of many occasional accompanied > occurrences with MSL is " spinal epidural lipomatosis " , i.e. within the > sheath of the spinal canal. > > Given this rarity within rarity, there's not a lot of statistics to go by, > as to exact corelations with rare OTHER possibly related symptoms. However > it appears that there are MSL correlations with most of the other mito > symptoms, so I went fishing on the " lipoma " theme. > > There's some great info in a letter to the editor in NEJM 10/28/99. > Admittedly this is re Cushing's syndrome, but I have my suspicions about at > least SOME inter-relatedness with MSL and possibly other mito, including the > " buffalo hump " (frightful term, but commonly used, and accurate) and other > mito problems induced by certain " anti-HIV " drugs (AZT and other NARTIs). > Perhaps there's a common axis for some of the metabolic screw-ups. > > A further search for " spinal epidural lipoma " or " spinal epidural > lipomatosis " at PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi shows a > lot of relevant hits. These articles generally cite MRI discovery. > > Importantly, I have no idea whether your cysts are lipomas, this is just my > suspicion. Seems like a reasonable hypothesis though, given the lipid > storage problems of some mito types. > > Regards > Steve D. > > Date: Tue, 26 Oct 2004 08:59:55 -0700 (PDT) > > Subject: spine and mito > >> I have a question, how commen are spine problems with > mito? I just receved my MRI reports, short version, > mine is toast! from the top down, including a cyst in > the cannal. >> markb > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 >Steve and Mark, About 18 years ago I had these golf ball size what I thought were lymph nodes. They were very painful I went to a dematologist who sent me to a surgeon to see if he wanted to remove one, he said would be a waste paper basket procedure. I was than sent to a doctor for blood work to check for lympthomia which all test were normal. They tought maybe I had CFS I wonder if I didn't have what you mentioned. Sincerely, Donna > > Date: 2004/10/27 Wed AM 07:07:46 EDT > To: > > Subject: Re: Re: spine and mito > > > Steve and Mark > > My mito doctors have told me that lipomas are more common in people with > mito than in the general population. I have hundreds of them. I had one > biopsied to make sure it was a lipomas and it was on the center of my back. > > I hope you get some answers Mark. > > laurie > > > > > Reply-To: > > Date: Wed, 27 Oct 2004 01:22:22 -0400 > > To: > > > Subject: Re: spine and mito > > > > > > Mark > > > > I have Multiple Symmetrical Lipomatosis (characterized by very large > > upper-truncal lipomas) which is one very rare type of mito disease (which of > > course is itself rather rare). One of many occasional accompanied > > occurrences with MSL is " spinal epidural lipomatosis " , i.e. within the > > sheath of the spinal canal. > > > > Given this rarity within rarity, there's not a lot of statistics to go by, > > as to exact corelations with rare OTHER possibly related symptoms. However > > it appears that there are MSL correlations with most of the other mito > > symptoms, so I went fishing on the " lipoma " theme. > > > > There's some great info in a letter to the editor in NEJM 10/28/99. > > Admittedly this is re Cushing's syndrome, but I have my suspicions about at > > least SOME inter-relatedness with MSL and possibly other mito, including the > > " buffalo hump " (frightful term, but commonly used, and accurate) and other > > mito problems induced by certain " anti-HIV " drugs (AZT and other NARTIs). > > Perhaps there's a common axis for some of the metabolic screw-ups. > > > > A further search for " spinal epidural lipoma " or " spinal epidural > > lipomatosis " at PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi shows a > > lot of relevant hits. These articles generally cite MRI discovery. > > > > Importantly, I have no idea whether your cysts are lipomas, this is just my > > suspicion. Seems like a reasonable hypothesis though, given the lipid > > storage problems of some mito types. > > > > Regards > > Steve D. > > > > Date: Tue, 26 Oct 2004 08:59:55 -0700 (PDT) > > > > Subject: spine and mito > > > >> I have a question, how commen are spine problems with > > mito? I just receved my MRI reports, short version, > > mine is toast! from the top down, including a cyst in > > the cannal. > >> markb > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 FYI - I am seeing a surgeon on Monday to investigate numerous lumps on my body, several in the trunk area of my back, but one in particular on the same side of the cochlear implant that does not work. This one is the largest that I know of and is about the size of a fist - I say baseball size. I do not know what the outcome will be but I've been told that I have both lipomas and cysts. I haven't counted these " bumps " and I don't think they are in the 100's but they are numerous and in every area of my body (arms, neck, back, legs) with one very hard one almost on the crown of my head. All of these produce pain but those on my right side are the worst right now. The ones on my back are making sleep a little difficult if I turn the wrong way. The large one on my neck causes pain up my head, down my back and down the right arm and of course on my neck if it's touched. I guess Monday could be just the beginning of another round of medical appointments. This now seems endless to me. I have tried to find time for a " break " from all this, but it doesn't seem as if this is in my future at the moment. Lipomas are common with Mito. I hear and read it from many. Alice spine and mito > >> I have a question, how commen are spine problems with > mito? I just receved my MRI reports, short version, > mine is toast! from the top down, including a cyst in > the cannal. >> markb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Alice Good luck at your appointment on Mon. I hope they can help you with the painful ones. I was told that they only remove them if they are producing pain and I now have some that qualify. Please let us know the surgeon's suggestions when you feel up to it. laurie > > Reply-To: > Date: Wed, 27 Oct 2004 08:48:02 -0600 > To: > > Subject: Re: Re: spine and mito > > FYI - I am seeing a surgeon on Monday to investigate numerous lumps on my > body, several in the trunk area of my back, but one in particular on the same > side of the cochlear implant that does not work. This one is the largest that > I know of and is about the size of a fist - I say baseball size. I do not > know what the outcome will be but I've been told that I have both lipomas and > cysts. I haven't counted these " bumps " and I don't think they are in the > 100's but they are numerous and in every area of my body (arms, neck, back, > legs) with one very hard one almost on the crown of my head. All of these > produce pain but those on my right side are the worst right now. The ones on > my back are making sleep a little difficult if I turn the wrong way. The large > one on my neck causes pain up my head, down my back and down the right arm and > of course on my neck if it's touched. > > I guess Monday could be just the beginning of another round of medical > appointments. This now seems endless to me. I have tried to find time for a > " break " from all this, but it doesn't seem as if this is in my future at the > moment. > > Lipomas are common with Mito. I hear and read it from many. > > Alice > spine and mito >> >>> I have a question, how commen are spine problems with >> mito? I just receved my MRI reports, short version, >> mine is toast! from the top down, including a cyst in >> the cannal. >>> markb >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Donna Lipomas can cause pain, especially when pressed. Removing them can be temporary so I was told to do nothing unless they became painful. laurie > > Reply-To: > Date: Wed, 27 Oct 2004 10:35:52 -0400 > To: > > Subject: Re: Re: Re: spine and mito > > >> Steve and Mark, > About 18 years ago I had these golf ball size what I thought were lymph nodes. > They were very painful I went to a dematologist who sent me to a surgeon to > see if he wanted to remove one, he said would be a waste paper basket > procedure. I was than sent to a doctor for blood work to check for lympthomia > which all test were normal. They tought maybe I had CFS I wonder if I didn't > have what you mentioned. > Sincerely, > Donna >> >> Date: 2004/10/27 Wed AM 07:07:46 EDT >> To: > >> Subject: Re: Re: spine and mito >> >> >> Steve and Mark >> >> My mito doctors have told me that lipomas are more common in people with >> mito than in the general population. I have hundreds of them. I had one >> biopsied to make sure it was a lipomas and it was on the center of my back. >> >> I hope you get some answers Mark. >> >> laurie >> >>> >>> Reply-To: >>> Date: Wed, 27 Oct 2004 01:22:22 -0400 >>> To: > >>> Subject: Re: spine and mito >>> >>> >>> Mark >>> >>> I have Multiple Symmetrical Lipomatosis (characterized by very large >>> upper-truncal lipomas) which is one very rare type of mito disease (which of >>> course is itself rather rare). One of many occasional accompanied >>> occurrences with MSL is " spinal epidural lipomatosis " , i.e. within the >>> sheath of the spinal canal. >>> >>> Given this rarity within rarity, there's not a lot of statistics to go by, >>> as to exact corelations with rare OTHER possibly related symptoms. However >>> it appears that there are MSL correlations with most of the other mito >>> symptoms, so I went fishing on the " lipoma " theme. >>> >>> There's some great info in a letter to the editor in NEJM 10/28/99. >>> Admittedly this is re Cushing's syndrome, but I have my suspicions about at >>> least SOME inter-relatedness with MSL and possibly other mito, including the >>> " buffalo hump " (frightful term, but commonly used, and accurate) and other >>> mito problems induced by certain " anti-HIV " drugs (AZT and other NARTIs). >>> Perhaps there's a common axis for some of the metabolic screw-ups. >>> >>> A further search for " spinal epidural lipoma " or " spinal epidural >>> lipomatosis " at PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi shows a >>> lot of relevant hits. These articles generally cite MRI discovery. >>> >>> Importantly, I have no idea whether your cysts are lipomas, this is just my >>> suspicion. Seems like a reasonable hypothesis though, given the lipid >>> storage problems of some mito types. >>> >>> Regards >>> Steve D. >>> >>> Date: Tue, 26 Oct 2004 08:59:55 -0700 (PDT) >>> >>> Subject: spine and mito >>> >>>> I have a question, how commen are spine problems with >>> mito? I just receved my MRI reports, short version, >>> mine is toast! from the top down, including a cyst in >>> the cannal. >>>> markb >>> >>> >>> >>> >>> >>> Medical advice, information, opinions, data and statements contained herein >>> are not necessarily those of the list moderators. The author of this e mail >>> is >>> entirely responsible for its content. List members are reminded of their >>> responsibility to evaluate the content of the postings and consult with >>> their >>> physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who sends one is >>> automatically moderated or removed depending on the severity of the attack. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Donna Lipomas can cause pain, especially when pressed. Removing them can be temporary so I was told to do nothing unless they became painful. laurie > > Reply-To: > Date: Wed, 27 Oct 2004 10:35:52 -0400 > To: > > Subject: Re: Re: Re: spine and mito > > >> Steve and Mark, > About 18 years ago I had these golf ball size what I thought were lymph nodes. > They were very painful I went to a dematologist who sent me to a surgeon to > see if he wanted to remove one, he said would be a waste paper basket > procedure. I was than sent to a doctor for blood work to check for lympthomia > which all test were normal. They tought maybe I had CFS I wonder if I didn't > have what you mentioned. > Sincerely, > Donna >> >> Date: 2004/10/27 Wed AM 07:07:46 EDT >> To: > >> Subject: Re: Re: spine and mito >> >> >> Steve and Mark >> >> My mito doctors have told me that lipomas are more common in people with >> mito than in the general population. I have hundreds of them. I had one >> biopsied to make sure it was a lipomas and it was on the center of my back. >> >> I hope you get some answers Mark. >> >> laurie >> >>> >>> Reply-To: >>> Date: Wed, 27 Oct 2004 01:22:22 -0400 >>> To: > >>> Subject: Re: spine and mito >>> >>> >>> Mark >>> >>> I have Multiple Symmetrical Lipomatosis (characterized by very large >>> upper-truncal lipomas) which is one very rare type of mito disease (which of >>> course is itself rather rare). One of many occasional accompanied >>> occurrences with MSL is " spinal epidural lipomatosis " , i.e. within the >>> sheath of the spinal canal. >>> >>> Given this rarity within rarity, there's not a lot of statistics to go by, >>> as to exact corelations with rare OTHER possibly related symptoms. However >>> it appears that there are MSL correlations with most of the other mito >>> symptoms, so I went fishing on the " lipoma " theme. >>> >>> There's some great info in a letter to the editor in NEJM 10/28/99. >>> Admittedly this is re Cushing's syndrome, but I have my suspicions about at >>> least SOME inter-relatedness with MSL and possibly other mito, including the >>> " buffalo hump " (frightful term, but commonly used, and accurate) and other >>> mito problems induced by certain " anti-HIV " drugs (AZT and other NARTIs). >>> Perhaps there's a common axis for some of the metabolic screw-ups. >>> >>> A further search for " spinal epidural lipoma " or " spinal epidural >>> lipomatosis " at PubMed http://www.ncbi.nlm.nih.gov/entrez/query.fcgi shows a >>> lot of relevant hits. These articles generally cite MRI discovery. >>> >>> Importantly, I have no idea whether your cysts are lipomas, this is just my >>> suspicion. Seems like a reasonable hypothesis though, given the lipid >>> storage problems of some mito types. >>> >>> Regards >>> Steve D. >>> >>> Date: Tue, 26 Oct 2004 08:59:55 -0700 (PDT) >>> >>> Subject: spine and mito >>> >>>> I have a question, how commen are spine problems with >>> mito? I just receved my MRI reports, short version, >>> mine is toast! from the top down, including a cyst in >>> the cannal. >>>> markb >>> >>> >>> >>> >>> >>> Medical advice, information, opinions, data and statements contained herein >>> are not necessarily those of the list moderators. The author of this e mail >>> is >>> entirely responsible for its content. List members are reminded of their >>> responsibility to evaluate the content of the postings and consult with >>> their >>> physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who sends one is >>> automatically moderated or removed depending on the severity of the attack. >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Alice, I hope Monday goes well for you and they can figure out something that will help. Smiles and hugs, a On Wed, 27 Oct 2004 08:48:02 -0600 " A ADAMS " justagram14@...> writes: FYI - I am seeing a surgeon on Monday to investigate numerous lumps on my body, several in the trunk area of my back, but one in particular on the same side of the cochlear implant that does not work. This one is the largest that I know of and is about the size of a fist - I say baseball size. I do not know what the outcome will be but I've been told that I have both lipomas and cysts. I haven't counted these " bumps " and I don't think they are in the 100's but they are numerous and in every area of my body (arms, neck, back, legs) with one very hard one almost on the crown of my head. All of these produce pain but those on my right side are the worst right now. The ones on my back are making sleep a little difficult if I turn the wrong way. The large one on my neck causes pain up my head, down my back and down the right arm and of course on my neck if it's touched. I guess Monday could be just the beginning of another round of medical appointments. This now seems endless to me. I have tried to find time for a " break " from all this, but it doesn't seem as if this is in my future at the moment. Lipomas are common with Mito. I hear and read it from many. Alice spine and mito > >> I have a question, how commen are spine problems with > mito? I just receved my MRI reports, short version, > mine is toast! from the top down, including a cyst in > the cannal. >> markb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Alice, I hope Monday goes well for you and they can figure out something that will help. Smiles and hugs, a On Wed, 27 Oct 2004 08:48:02 -0600 " A ADAMS " justagram14@...> writes: FYI - I am seeing a surgeon on Monday to investigate numerous lumps on my body, several in the trunk area of my back, but one in particular on the same side of the cochlear implant that does not work. This one is the largest that I know of and is about the size of a fist - I say baseball size. I do not know what the outcome will be but I've been told that I have both lipomas and cysts. I haven't counted these " bumps " and I don't think they are in the 100's but they are numerous and in every area of my body (arms, neck, back, legs) with one very hard one almost on the crown of my head. All of these produce pain but those on my right side are the worst right now. The ones on my back are making sleep a little difficult if I turn the wrong way. The large one on my neck causes pain up my head, down my back and down the right arm and of course on my neck if it's touched. I guess Monday could be just the beginning of another round of medical appointments. This now seems endless to me. I have tried to find time for a " break " from all this, but it doesn't seem as if this is in my future at the moment. Lipomas are common with Mito. I hear and read it from many. Alice spine and mito > >> I have a question, how commen are spine problems with > mito? I just receved my MRI reports, short version, > mine is toast! from the top down, including a cyst in > the cannal. >> markb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Dear Alice I am so sorry to hear that you have another problematic, painful medical necessity to deal with. I have admired you positive, supportive, and accepting attitude so often. I hope that wonderful spirit sustains you through this new challenge as well. I wish you the best of luck and send you my most hopeful prayers. Take care Sunny > FYI - I am seeing a surgeon on Monday to investigate numerous lumps on > my body, several in the trunk area of my back, but one in particular > on the same side of the cochlear implant that does not work. This one > is the largest that I know of and is about the size of a fist - I say > baseball size. I do not know what the outcome will be but I've been > told that I have both lipomas and cysts. I haven't counted these > " bumps " and I don't think they are in the 100's but they are numerous > and in every area of my body (arms, neck, back, legs) with one very > hard one almost on the crown of my head. All of these produce pain > but those on my right side are the worst right now. The ones on my > back are making sleep a little difficult if I turn the wrong way. The > large one on my neck causes pain up my head, down my back and down the > right arm and of course on my neck if it's touched. > > I guess Monday could be just the beginning of another round of > medical appointments. This now seems endless to me. I have tried to > find time for a " break " from all this, but it doesn't seem as if this > is in my future at the moment.  > > Lipomas are common with Mito. I hear and read it from many. > > Alice >  spine and mito >  > >  >> I have a question, how commen are spine problems with >  > mito? I just receved my MRI reports, short version, >  > mine is toast! from the top down, including a cyst in >  > the cannal. >  >> markb >  > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Alice, So sorry to hear that you are experiencing so much pain. I hope the surgeon can help you on Monday. I will keep you in my prayers and please update us when you can. Hugs, Ann-Marie spine and mito > >> I have a question, how commen are spine problems with > mito? I just receved my MRI reports, short version, > mine is toast! from the top down, including a cyst in > the cannal. >> markb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Yes Alice, you sure do need a break from all of this. I will be thinking about you on Monday, Hope it all goes well. let us know, Smiles, spine and mito > > > >> I have a question, how commen are spine problems with > > mito? I just receved my MRI reports, short version, > > mine is toast! from the top down, including a cyst in > > the cannal. > >> markb > > > > > Quote Link to comment Share on other sites More sharing options...
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