Guest guest Posted September 29, 2005 Report Share Posted September 29, 2005 Steve Lamictal works the same way as Depakote for calming the nerves that cause the myoclonus. It is thought to be safe for us mito folks, but does need to be started at low doses as it has its own set of possible side effects. I have been on it for several years and it has helped with the myoclonus - improvement, not total absence. I agree that it is terrible that you can't get your records from this neuro. Just a couple of ideas. Was his practice taken over by someone else - they would have the records. Can you at least get copies of labs, etc. that were done elsewhere. I think this is lesson for all - we need to get copies of our records, one record at a time and keep them in a notebook. I will travel further for a lab draw, just because it is easier to get copies of the labs. I hope you can find some way to retrieve at least some of your records. laurie > Thanks for the pointers, Barbara. Below is not a criticism of YOU, of > course, but just my usual rant. > > Unfortunately, nowhere in the part about diagnosis does it say anything > about what myoclonus LOOKS LIKE. But at least at the very end, it mentions > mito, under " other " . > > In the treatment part, valproic acid (Depakote) is featured. As you or > others may recall, I'm on a bit of a crusade over this evil substance. For > several years, my " first " unaware and uninterested neuro prescribed a LOT of > Depakote. He checked levels of this stuff in my blood every few months, to > be sure I had a therapeutic amount but not too much. He initially asked > whether I had known liver disease, and I said no. He never, initially or > ongoingly, did any liver tests. My primary doc during this period once did > liver tests as part of a general screen (what the heck is the increasing > PROBLEM with me?), which revealed that I had a couple of just-a-bit too-high > values, but he didn't seem too interested and certainly didn't tell my > neuro. Much later, I've developed hepatic steatosis. ALSO later, I've > developed Multiple Symmetrical Lipomatosis (MSL). And I've always had MERRF > (M is for myoclonus, of course), but it wasn't proven until recently. > > I expect I was destined to have mito symptoms (actually DID, all my life, > but only gradually increasing until the last few years). However, I also > believe that the Depakote was somehow involved in making it worse, > especially regarding my liver function and the MSL. > > Just because I have a RARE condition doesn't, in my opinion, let that first > neuro doc off the hook, for not being more careful about the documented side > effects. Sure, there is a cost tradeoff in testing everyone for rare > conditions, but that's cold comfort to me. Kind of like how Katrina victims > feel, when they heard that the Army Corps. of Eng. COULD have built the > levees to Cat-5, but on the basis of a COST-BENEFITanalysis, decided to only > build to Cat-3. Oops, bad guess. Cold comfort indeed. > > By the way, when I tried to get medical records from this neuro, I found out > that he had lost his medical license and left the country. Can it be, that > as a result there is NO record I can access, about any of this treatment? > What a screwy system THAT is. There should be some central repository or > something, for this situation. > > Steve D. > > > Date: Wed, 28 Sep 2005 12:47:12 -0500 > > > >Subject: myoclonus links > > > >http://www.mayoclinic.org/myoclonus/diagnosis.html > > > >http://www.mayoclinic.org/myoclonus/treatment.html > > > > > > 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 September 29, 2005 Report Share Posted September 29, 2005 Steve, I certainly agree with you on valproic acid. I would never take it and I'm not surprised you had problems with it. On the overview page, there was this definition of myoclonus, but no description other than " jerks. " " Myoclonus refers to sudden, brief, shocklike involuntary movements caused by muscle contractions or relaxations. ( " Myo " means muscle and " clonus " means jerk.) If the movements are contractions, they're called " positive myoclonus. " If they're relaxations, they're called " negative myoclonus " or asterixis. Myoclonus is caused by a malfunction in the nervous system that sends out inappropriate electrical discharges. " I tend to think of myoclonus as repetitive jerks or strong jerks of one limb or body part or whole body jerks, as opposed to the small twitches usually known as fasciculations. Most likely a neurologist would point out qualitative differences as well, not to mention etiology, implications, etc. > > > Thanks for the pointers, Barbara. Below is not a criticism of YOU, of > > course, but just my usual rant. > > > > Unfortunately, nowhere in the part about diagnosis does it say anything > > about what myoclonus LOOKS LIKE. But at least at the very end, it mentions > > mito, under " other " . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2005 Report Share Posted September 29, 2005 Barbara and Steve The differences can be seen on an EMG if you happen to have them frequently enough to be caught. I have both myoclonus and facillations in my hands. They feel different. The myoclonus is quick and then over, but can return in minutes. Mine are sometimes repetitive, but often single at irregular intervels. They are sometimes followed by a stabbing pain or itching feeling. My myoclonus tends to be in certain body parts for some time and then move to a new place. I have them " anywhere " during the same period of time. laurie > Steve, I certainly agree with you on valproic acid. I would never take it > and I'm not surprised you had problems with it. On the overview page, there > was this definition of myoclonus, but no description other than " jerks. " > > " Myoclonus refers to sudden, brief, shocklike involuntary movements caused > by muscle contractions or relaxations. ( " Myo " means muscle and " clonus " > means jerk.) If the movements are contractions, they're called " positive > myoclonus. " If they're relaxations, they're called " negative myoclonus " or > asterixis. Myoclonus is caused by a malfunction in the nervous system that > sends out inappropriate electrical discharges. " > > I tend to think of myoclonus as repetitive jerks or strong jerks of one limb > or body part or whole body jerks, as opposed to the small twitches usually > known as fasciculations. Most likely a neurologist would point out > qualitative differences as well, not to mention etiology, implications, etc. > > > > > > > Thanks for the pointers, Barbara. Below is not a criticism of YOU, of > > > course, but just my usual rant. > > > > > > Unfortunately, nowhere in the part about diagnosis does it say anything > > > about what myoclonus LOOKS LIKE. But at least at the very end, it > mentions > > > mito, under " other " . > > > > > > 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 September 29, 2005 Report Share Posted September 29, 2005 Right, I have no trouble distinguishing them in my own body, having both, just not sure exactly what terms a neurologist would use to distinguish. B > Re: RE: myoclonus links > > Barbara and Steve > > The differences can be seen on an EMG if you happen to have them > frequently enough to be caught. > > I have both myoclonus and facillations in my hands. They feel > different. The myoclonus is quick and then over, but can return in > minutes. Mine are sometimes repetitive, but often single at irregular > intervels. They are sometimes followed by a stabbing pain or itching > feeling. My myoclonus tends to be in certain body parts for some time > and then move to a new place. I have them " anywhere " during the same > period of time. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2005 Report Share Posted September 29, 2005 Barbara I agree there. About the only thing my doctor had trouble with was when we were starting down the road together and I mentioned that I had had a crash - he thought I meant with my car. He now uses the term as we do. laurie > Right, I have no trouble distinguishing them in my own body, having both, > just not sure exactly what terms a neurologist would use to distinguish. > > B > > > Re: RE: myoclonus links > > > > Barbara and Steve > > > > The differences can be seen on an EMG if you happen to have them > > frequently enough to be caught. > > > > I have both myoclonus and facillations in my hands. They feel > > different. The myoclonus is quick and then over, but can return in > > minutes. Mine are sometimes repetitive, but often single at irregular > > intervels. They are sometimes followed by a stabbing pain or itching > > feeling. My myoclonus tends to be in certain body parts for some time > > and then move to a new place. I have them " anywhere " during the same > > period of time. > > > > laurie > > > > > > 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 September 29, 2005 Report Share Posted September 29, 2005 Ha ha. That's a good story. B > I agree there. About the only thing my doctor had trouble with was > when we were starting down the road together and I mentioned that I > had had a crash - he thought I meant with my car. He now uses the term > as we do. > > laurie > > > > Right, I have no trouble distinguishing them in my own body, having both, > > just not sure exactly what terms a neurologist would use to distinguish. Quote Link to comment Share on other sites More sharing options...
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