Guest guest Posted April 29, 1998 Report Share Posted April 29, 1998 Heidi, I ate wheat one time after fasting from it to see if I was allergic or sensitive to it. During the night I got up to go to the bathroom and my leg went out from under me. I fell. It was not asleep. It took most of the next day before it started working right again and several days until it was normal feeling. There was never any tingling or anything like a limb asleep. It just wouldn't work-it was like limp spaggetti. My 2 yr old grandson got up one day and almost couldn't walk. He cried when we touched his legs. He walked like it hurt and then would fall or lay down. That evening he suddenly started walking like normal again. I have a grandson who is very clumsy/uncoordinated and when he gets exposed to certain things (like cleaning products) he starts stumbling and toeing in bad. Hope that helps. S. Re: Leg problems > > >Hello all, > Thanks to everyone who wrote me about Holli's problems last week. We ended up taking her to the >local doctor who ruled out any injury or trauma. He said that he thought perhaps her " numbers " were out >of whack along with possibly her electrolytes although he himself did not have the facilities to check >it. So, we decided to wait it out and see if there was any improvement and if not then we were going to >go to the " mito " doc on Monday. As it turns out, by Saturday morning things were starting to resolve >themselves. She went from basically not being able to move her leg at all on Friday to being able to move >it and walk with a limp by Saturday evening. By Sunday morning, things were back to normal. We have >never had this happen before(where she lost all function) so we will be sure to bring it to her docs >attention at her next appointment. Has anyone else had to deal with this? Lynnie, I know you talked >about your daughter's cramping in the front of her legs....how long does an episode of that last? Is it >continuous or does it come and go? Well, thanks to all for such great advice! >Heidi >mom to: >Holli (almost 5, complex I) > (8, NDA) >Addam (10, ADHD, LD, etc.) > > > >------------------------------------------------------------------------ >Are you hogging all the fun? >http://www.ONElist.com >Friends tell friends about ONElist! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1998 Report Share Posted April 29, 1998 Heidi, I ate wheat one time after fasting from it to see if I was allergic or sensitive to it. During the night I got up to go to the bathroom and my leg went out from under me. I fell. It was not asleep. It took most of the next day before it started working right again and several days until it was normal feeling. There was never any tingling or anything like a limb asleep. It just wouldn't work-it was like limp spaggetti. My 2 yr old grandson got up one day and almost couldn't walk. He cried when we touched his legs. He walked like it hurt and then would fall or lay down. That evening he suddenly started walking like normal again. I have a grandson who is very clumsy/uncoordinated and when he gets exposed to certain things (like cleaning products) he starts stumbling and toeing in bad. Hope that helps. S. Re: Leg problems > > >Hello all, > Thanks to everyone who wrote me about Holli's problems last week. We ended up taking her to the >local doctor who ruled out any injury or trauma. He said that he thought perhaps her " numbers " were out >of whack along with possibly her electrolytes although he himself did not have the facilities to check >it. So, we decided to wait it out and see if there was any improvement and if not then we were going to >go to the " mito " doc on Monday. As it turns out, by Saturday morning things were starting to resolve >themselves. She went from basically not being able to move her leg at all on Friday to being able to move >it and walk with a limp by Saturday evening. By Sunday morning, things were back to normal. We have >never had this happen before(where she lost all function) so we will be sure to bring it to her docs >attention at her next appointment. Has anyone else had to deal with this? Lynnie, I know you talked >about your daughter's cramping in the front of her legs....how long does an episode of that last? Is it >continuous or does it come and go? Well, thanks to all for such great advice! >Heidi >mom to: >Holli (almost 5, complex I) > (8, NDA) >Addam (10, ADHD, LD, etc.) > > > >------------------------------------------------------------------------ >Are you hogging all the fun? >http://www.ONElist.com >Friends tell friends about ONElist! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1998 Report Share Posted April 29, 1998 Cheri, that makes sense in our case (that it is nerve related) as it seems to be our nervous system that is affected so severely by the chemicals and the wheat. At one time I had the wheat thing connected in a line of something like wheat=gluten=glutamine or glutamate (also to do with glutathione), ties in with monosodium glutamate too, etc. (sorry, sketchy) One time I took glutamic acid or glutamine (the amino acid) prescribed by a university and I was suicidal in bed within a few hours. They then prescribed aspartic acid which lifted me up. (I may not have these names exactly right-sorry). S. Re: Leg problems >From: School8507@... > > > > >>She went from basically not being able to move her leg at all on Friday >>to being able to move >>it and walk with a limp by Saturday evening. By Sunday morning, things >>were back to normal. We have >>never had this happen before(where she lost all function) so we will be >>sure to bring it to her docs >>attention at her next appointment. Has anyone else had to deal with this? > > >Holli, > >Back when we thought I had MS, I had a spell where I couldn't even stand >hardly, much less walk. It was all nerve related and it did get better. > >Cheri > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.onelist.com >Sign up for a new e-mail list today! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1998 Report Share Posted April 29, 1998 Cheri, that makes sense in our case (that it is nerve related) as it seems to be our nervous system that is affected so severely by the chemicals and the wheat. At one time I had the wheat thing connected in a line of something like wheat=gluten=glutamine or glutamate (also to do with glutathione), ties in with monosodium glutamate too, etc. (sorry, sketchy) One time I took glutamic acid or glutamine (the amino acid) prescribed by a university and I was suicidal in bed within a few hours. They then prescribed aspartic acid which lifted me up. (I may not have these names exactly right-sorry). S. Re: Leg problems >From: School8507@... > > > > >>She went from basically not being able to move her leg at all on Friday >>to being able to move >>it and walk with a limp by Saturday evening. By Sunday morning, things >>were back to normal. We have >>never had this happen before(where she lost all function) so we will be >>sure to bring it to her docs >>attention at her next appointment. Has anyone else had to deal with this? > > >Holli, > >Back when we thought I had MS, I had a spell where I couldn't even stand >hardly, much less walk. It was all nerve related and it did get better. > >Cheri > >------------------------------------------------------------------------ >New hobbies? New curiosities? New enthusiasms? >http://www.onelist.com >Sign up for a new e-mail list today! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 Heidi, if there's someone local who is fairly bright and easy to communicate with, it might be worth your while to contact them and tell them just what you've told us here -- your dilemma about traveling all the way to the specialist and feeling silly if it's a sprain, but at the same time not wanting to waste time getting her there if needed. Maybe if they're aware from the outset that there are specialists you can call if the diagnosis isn't obvious, they'll feel less pressure to hem and haw and try to figure things out, and more confidence in advising you to go on the the specialist. One possible scenario to throw in the pot and mull over. Let us know what happens and what you find out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1999 Report Share Posted April 23, 1999 In a message dated 99-04-23 11:10:54 EDT, you write: << My question is basically could this be mito related? If so, I would rather drive a few hours so that she can see someone knowledgeable in the field than take her to the emergency room where chances are fairly good they will have absolutely no idea what I am talking about. I guess I am afraid if I take her all the way to the mito doctor and she has a sprain or a broken bone from something I would feel rather stupid. I hate to automatically assume mito but like I said she has not fallen or anything and did not seem hurt last night. She is essentially nonverbal so she can not really tell me anything. Any help would be appreciated. Thanks, Heidi >> Dear Heidi: Our daughter, Amy is 22 yeaars old and has a suspected mito-encephalomyopathy. She OFTEN has us massage her sholders and lower back complaining that it really hurts, and now is complaining of pain in her lower legs. She almost crys and wants us to massage her lower legs, usually accross the top of the calf (just above her ankel. She says it hurts in the front not the back side. She also complains of pain in her wrists. Our Neuro is in a quandry about this. Sound famillure? Lynnie Wife, Mother, Advocate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 1999 Report Share Posted April 25, 1999 Heidi, If I were in you situation I would not do the ER route. I would wait until the weekend is over, unless I felt it was an emergency, and at 9 AM monday I'd be on the phone to the DR. I need to talk to. Hang in there and wait for the right DR. if you think you can and not an emergency. Kathy ---------- > From: GOLYNIE@... > To: Mitoonelist > Subject: Re: Leg problems > Date: Friday, April 23, 1999 12:39 PM > > From: GOLYNIE@... > > In a message dated 99-04-23 11:10:54 EDT, you write: > > << My question is basically could this be > mito related? If so, I would rather drive a few hours so that she can > see someone knowledgeable in the field than take her to the emergency > room where chances are fairly good they will have absolutely no idea > what I am talking about. I guess I am afraid if I take her all the way > to the mito doctor and she has a sprain or a broken bone from something > I would feel rather stupid. I hate to automatically assume mito but > like I said she has not fallen or anything and did not seem hurt last > night. She is essentially nonverbal so she can not really tell me > anything. Any help would be appreciated. > Thanks, > Heidi > >> > > Dear Heidi: > > Our daughter, Amy is 22 yeaars old and has a suspected > mito-encephalomyopathy. She OFTEN has us massage her sholders and lower back > complaining that it really hurts, and now is complaining of pain in her lower > legs. She almost crys and wants us to massage her lower legs, usually > accross the top of the calf (just above her ankel. She says it hurts in the > front not the back side. She also complains of pain in her wrists. Our > Neuro is in a quandry about this. Sound famillure? > > Lynnie > Wife, Mother, Advocate > > ------------------------------------------------------------------------ > Are you hogging all the fun? > http://www.ONElist.com > Friends tell friends about ONElist! > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 1999 Report Share Posted April 25, 1999 Heidi, If I were in you situation I would not do the ER route. I would wait until the weekend is over, unless I felt it was an emergency, and at 9 AM monday I'd be on the phone to the DR. I need to talk to. Hang in there and wait for the right DR. if you think you can and not an emergency. Kathy ---------- > From: GOLYNIE@... > To: Mitoonelist > Subject: Re: Leg problems > Date: Friday, April 23, 1999 12:39 PM > > From: GOLYNIE@... > > In a message dated 99-04-23 11:10:54 EDT, you write: > > << My question is basically could this be > mito related? If so, I would rather drive a few hours so that she can > see someone knowledgeable in the field than take her to the emergency > room where chances are fairly good they will have absolutely no idea > what I am talking about. I guess I am afraid if I take her all the way > to the mito doctor and she has a sprain or a broken bone from something > I would feel rather stupid. I hate to automatically assume mito but > like I said she has not fallen or anything and did not seem hurt last > night. She is essentially nonverbal so she can not really tell me > anything. Any help would be appreciated. > Thanks, > Heidi > >> > > Dear Heidi: > > Our daughter, Amy is 22 yeaars old and has a suspected > mito-encephalomyopathy. She OFTEN has us massage her sholders and lower back > complaining that it really hurts, and now is complaining of pain in her lower > legs. She almost crys and wants us to massage her lower legs, usually > accross the top of the calf (just above her ankel. She says it hurts in the > front not the back side. She also complains of pain in her wrists. Our > Neuro is in a quandry about this. Sound famillure? > > Lynnie > Wife, Mother, Advocate > > ------------------------------------------------------------------------ > Are you hogging all the fun? > http://www.ONElist.com > Friends tell friends about ONElist! > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 1999 Report Share Posted April 28, 1999 Heidi, You probably already updated the list on your daughter's leg problem, but I missed it if you did. I was wondering how she is feeling and what you ended up doing? I hope she is up and walking! Lipps mom to , Mackenzie and Savannah (Complex I) > Hello, > I have an almost five year old daughter with presumed Complex I > and/or PDH. We have never seen any regression but development has been > very slow. This morning my daughter woke up and she can not walk. Her > left leg is not moving and if I touch it she winces as if in pain. She > seems perfectly fine as long as she is seated and not moving. I am not > sure if this is mito related or not. She did not fall or anything to my > knowledge. She went to sleep very early last night and had this problem > this morning when she woke up. I will take her to the doctor this > evening if it is not better. My question is basically could this be > mito related? If so, I would rather drive a few hours so that she can > see someone knowledgeable in the field than take her to the emergency > room where chances are fairly good they will have absolutely no idea > what I am talking about. I guess I am afraid if I take her all the way > to the mito doctor and she has a sprain or a broken bone from something > I would feel rather stupid. I hate to automatically assume mito but > like I said she has not fallen or anything and did not seem hurt last > night. She is essentially nonverbal so she can not really tell me > anything. Any help would be appreciated. > Thanks, > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 >She went from basically not being able to move her leg at all on Friday >to being able to move >it and walk with a limp by Saturday evening. By Sunday morning, things >were back to normal. We have >never had this happen before(where she lost all function) so we will be >sure to bring it to her docs >attention at her next appointment. Has anyone else had to deal with this? Holli, Back when we thought I had MS, I had a spell where I couldn't even stand hardly, much less walk. It was all nerve related and it did get better. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 >She went from basically not being able to move her leg at all on Friday >to being able to move >it and walk with a limp by Saturday evening. By Sunday morning, things >were back to normal. We have >never had this happen before(where she lost all function) so we will be >sure to bring it to her docs >attention at her next appointment. Has anyone else had to deal with this? Holli, Back when we thought I had MS, I had a spell where I couldn't even stand hardly, much less walk. It was all nerve related and it did get better. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 1999 Report Share Posted April 29, 1999 Hello all, Thanks to everyone who wrote me about Holli's problems last week. We ended up taking her to the local doctor who ruled out any injury or trauma. He said that he thought perhaps her " numbers " were out of whack along with possibly her electrolytes although he himself did not have the facilities to check it. So, we decided to wait it out and see if there was any improvement and if not then we were going to go to the " mito " doc on Monday. As it turns out, by Saturday morning things were starting to resolve themselves. She went from basically not being able to move her leg at all on Friday to being able to move it and walk with a limp by Saturday evening. By Sunday morning, things were back to normal. We have never had this happen before(where she lost all function) so we will be sure to bring it to her docs attention at her next appointment. Has anyone else had to deal with this? Lynnie, I know you talked about your daughter's cramping in the front of her legs....how long does an episode of that last? Is it continuous or does it come and go? Well, thanks to all for such great advice! Heidi mom to: Holli (almost 5, complex I) (8, NDA) Addam (10, ADHD, LD, etc.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 1999 Report Share Posted April 30, 1999 In a message dated 99-04-29 11:37:55 EDT, you write: << Lynnie, I know you talked about your daughter's cramping in the front of her legs....how long does an episode of that last? Is it continuous or does it come and go? Well, thanks to all for such great advice! Heidi >> Dear Heidi: Episodes last from about an hour to 24 hours... It seems to be continuous. I wonder if it is caused by Lactic Acid pooling in a muscle that has been used a lot at any particular time. Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 1999 Report Share Posted April 30, 1999 In a message dated 99-04-29 11:37:55 EDT, you write: << Lynnie, I know you talked about your daughter's cramping in the front of her legs....how long does an episode of that last? Is it continuous or does it come and go? Well, thanks to all for such great advice! Heidi >> Dear Heidi: Episodes last from about an hour to 24 hours... It seems to be continuous. I wonder if it is caused by Lactic Acid pooling in a muscle that has been used a lot at any particular time. Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Heidi and Barry wrote: > Has anyone else had to deal with this? Heidi, Caitlin used to have these kinds of episodes when her headaches were less controlled. There seemed to be a headach, seizure/strokeline episode or some type that was going on and we referred to them as " neurologic events " . Sometimes she would drag her right side, and other times she would wake up and be unable to walk or stand. Many times it was just her right side, with only occasional episodes on the left. She even drooped on the right side of her face sometimes. The episodes would last anywhere from hours to days, but most of the time, usually completely resolved. They always seemed to be tied to some sort of an " event " or headache though, even though she was quite young when it all started. Glad she's better, Take care, Jeannine Quote Link to comment Share on other sites More sharing options...
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