Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 Thank you, I have had several MRI's over the past year and half. a lesion was reproted in the thoracic cord a year ago, it was a 8mmX3mm lesion in the grey matter in the cord. a MRI done two days ago showed the lesion had expanded to cross over the grey matter into the white and was enhancing with gadolidium and grew to 10mmX6mm. they said it was either a sstroke. demylinating lesion or actrocytoma (neoplasm). My questioning is if it were a lesion or stroke why would it start growing one tear alter and on the last MRI it did not enhance and was non expansible now it is. I have a complex II/III defect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 Do any of you know what forms of mito have lesions in the spinal cord? thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 Joanne, Just to make sure I'm understanding your post, are you saying all these findings are known to be associated with various mitochondrial diseases? Are the mass lesions you list associated only with von Hippel-u? Is von Hippel-u a mitochondrial disorder? If so, could you point me to the citation that reports meningioma in von Hippel-u? I have a meningioma, right frontal lobe, and have had Gamma Knife to halt growth (hopefully), but I have never seen anything in the literature that associated meningiomas with mitochondrial disease and would be very interested any cause-and-effect evidence that connects those two dots. Meningiomas are common in the general population, so my doctors have thought the tumor was just coincidence and not an associated condition. Thanks! Barbara > I have heard of tumors or lesions in patients with all of the common types of > mitochondrial disease. Neuroblastomas, for example, have been reported in > children with defects in Complex I, III and IV and ANT. > > There are also publications that support the finding of the following lesions in the : > SPG7, SPG13, HHH syndrome, Spastic dystonia, Mitochondrial tRNA Il, Leber's > > Mass lesions have been reported in : von Hippel-u : Hemangioblastoma, > Neurofibromatosis (Type I and Type II), Meningioma, Multiple hamartoma, and > Lipoma > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 Hi , Do you have a copy of the formal report? If so, if you'd like, I'd be happy to present it to the neuroradiologists that I work with a ask for their unofficial opinion. Another option would be to send a copy of the films to Dr. Cohen and request a formal interpertaion of an outside exam. There would be a charge for this (at least at U of C there is). Given 60% of his clinical practice is tumor he would be a good physician to ask. If you'd like me to get the opinion of the docs I work with send me a post off list and I;ll give you a dedicated fax number to send the report. MitomomX3@... wrote: Thank you, I have had several MRI's over the past year and half. a lesion was reproted in the thoracic cord a year ago, it was a 8mmX3mm lesion in the grey matter in the cord. a MRI done two days ago showed the lesion had expanded to cross over the grey matter into the white and was enhancing with gadolidium and grew to 10mmX6mm. they said it was either a sstroke. demylinating lesion or actrocytoma (neoplasm). My questioning is if it were a lesion or stroke why would it start growing one tear alter and on the last MRI it did not enhance and was non expansible now it is. I have a complex II/III defect. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2005 Report Share Posted December 17, 2005 http://www.neuro.wustl.edu/neuromuscular/spinal/fsp.html I did a search for spinal cord lesions and mitochondrial disease. I also did a search for thoracic spine and mitochondrial disease. Then I repeated search doing a mesh search/ The association was listed in a small number of places. I suspect this indicates that both disease processes have been reported in the same patient. I know there are a number of children with mitochondrial disease that have had neuroblastomas. There are also a number of children with CCHS that have had neuroblastoms. Some docs who think outside of the box believe there is an association between mitochondrial disease and CCHS, others do not. It's all a matter of opinion and clinical experience. I really don't know much about von Hippel-u. I'd have to look into it further with the databases I have as resources at work next week. Barbara Seaman wheatchild@...> wrote: Joanne, Just to make sure I'm understanding your post, are you saying all these findings are known to be associated with various mitochondrial diseases? Are the mass lesions you list associated only with von Hippel-u? Is von Hippel-u a mitochondrial disorder? If so, could you point me to the citation that reports meningioma in von Hippel-u? I have a meningioma, right frontal lobe, and have had Gamma Knife to halt growth (hopefully), but I have never seen anything in the literature that associated meningiomas with mitochondrial disease and would be very interested any cause-and-effect evidence that connects those two dots. Meningiomas are common in the general population, so my doctors have thought the tumor was just coincidence and not an associated condition. Thanks! Barbara > I have heard of tumors or lesions in patients with all of the common types of > mitochondrial disease. Neuroblastomas, for example, have been reported in > children with defects in Complex I, III and IV and ANT. > > There are also publications that support the finding of the following lesions in the : > SPG7, SPG13, HHH syndrome, Spastic dystonia, Mitochondrial tRNA Il, Leber's > > Mass lesions have been reported in : von Hippel-u : Hemangioblastoma, > Neurofibromatosis (Type I and Type II), Meningioma, Multiple hamartoma, and > Lipoma > 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 December 17, 2005 Report Share Posted December 17, 2005 Hi , I am not sure I am sorry though years ago I had an MRI come back with lesions on my pituatary gland do you know if that could be mito related? Thank you. Hugs, Donna K ---- mitomomx3 MitomomX3@...> wrote: > Do any of you know what forms of mito have lesions in the spinal cord? > thanks > > > > > > > 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 December 20, 2005 Report Share Posted December 20, 2005 In Multiple Symmetrical Lipomatosis (MSL), the most common locations for the lipomas are (symmetrically, of course) on the backside of the head, neck, shoulders, and upper back. The definitive lipomas of MSL are, uncharacteristically, deep and UNencapsulated. However, there have been occasional other locations, including epidural and intradural, typically in the cervical region. Other occasional locations are in the parotid salivary glands and various sites around the ears and jaw. All of these aren't usually discovered until they are interfering with other body processes, or causing mass-effect neuro problems. Sometimes there are associated more dangerous, cancerous angiolipomas. MSL has unknown etiology, but there appears to be a few important correlations, including MERRF (20% of MSL have MERRF, almost always the A8344G type) and other inherited patterns (of possibly undiscovered and/or uncategorized mito dysfunction). Also, AZT and other AART (active anti-retroviral therapy) meds used for treating HIV/AIDS rather frequently cause BOTH mito damage and a " buffalo hump " which is strikingly similiar to advanced MSL, but I've only seen a couple of recent medical articles suggesting some link between these two. MSL is associated with lipid storage errors (not too surprisingly) and therefore IMHO at least could be linked to an FAO disorder in mito function. Steve D. > Date: Sat, 17 Dec 2005 13:59:18 -0000 > > Subject: lesion in spinal cord > > Do any of you know what forms of mito have lesions in the spinal cord? > thanks Quote Link to comment Share on other sites More sharing options...
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