Guest guest Posted May 4, 1998 Report Share Posted May 4, 1998 Lynnie, doesn't that just make you so angry that the Dr.s can decide whether to do a test or not? It seems to me it should be our choice in most cases. S. Re: lactic acid >From: GOLYNIE@... > >In a message dated 99-05-02 20:52:29 EDT, you write: > ><< Hi , To check lactic acid in the brain, has an MRI scheduled >for May 7 and then an MRS on May 20-th. Don't know anything yet, will let you >know when we have the results. Thanks for inquiring. Becky > P.S. is doing very well!!!!!!!! >> > >Dear Becky: > >Wish I had your doc! Amy's doc won't do an MRS. He doesn't " think it will >help so why do the test - spend all that $? " >Ouch. >Good luck. I hope you get lots of info:) > >Lynnie MOrgan > >------------------------------------------------------------------------ >Looking for the perfect gift for a friend? >http://www.onelist.com >Tell them about ONElist's 130,000 free e-mail communities! >------------------------------------------------------------------------ >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 May 4, 1998 Report Share Posted May 4, 1998 Cheri, I do not have the symptoms you have this way. That must be terribly hard for you. I do wonder if you know what causes brain swelling and do you have that also? People think I am nuts for saying I can feel my whole brain swell or sometimes only a band across the front. The pressure gets so bad you want to drill a hole to release some. I wonder if brain cells respond to things they are allergic or sensitive to like other body cells and get extra water in them trying to water down the offensive item in them? S. Re: lactic acid >From: School8507@... > > > > >>I'm not sure what high >> >>lactic acid in the brain can do to a person, but I'm sure its not good. >> >I'm told it is high lactate that is responsible for the burning sensations I >have in my brain. It is very clear that extremely high dosages of coq10 >makes it better and the assumption is that coq10 can help make ATP. As my >peak of coq10 wears off, more brain symptoms worsen with increased burning as >well as seeing green, numbness to the face and tongue, facial twitches and >fazing in and out with extreme sleepiness. > >Cheri > >------------------------------------------------------------------------ >ONElist: bringing the world together. >http://www.onelist.com >Join 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 May 4, 1998 Report Share Posted May 4, 1998 Lynnie and everyone, It isn't even that. I argued with the metabolic labs at WA State Univer. and OR Health Sciences Center both to test us for PDHC def. and they refused. I have excellant insurance, had referances from 2 Dr.s, and could pay the rest. They said THEY could chose whether to test for something or not and since we weren't dead or in institutions they didn't feel we could have a mito disorder so they refused, they said it was their right. One of the nurses confided to me the one Dr. didn't like me coming with a ready made diagnosis. I got the papers to Shoffner who everyone insisted was a giant of a man and he sent me the single sentence response-You can find a local Dr. to help you with your concerns. He never responded at all to a fax I sent asking for clarification and suggestions for a local Dr. We lose. Now here is my 4 yr old grandson trying to commit suicide. God is watching the whole thing. He knows. How much ego was involved with Jonah's case? My house is trash this morning after Kody's tirade. This time I kept calm remembering the Dr.s admonition that he is 7 and not emotionally mature and has ADHD, etc. but my day and my self is shot. I am trying to hold together. I am at my wits end. I feel like I'm flipping all over the place. I got extreme abuse from my father because of the mito and now even tho I am working like hell to stop the cycle I am still suffering on the other end with the grandkids (and kids) who I can't get help for even tho I feel I know what is wrong. It feels like the world is playing a game and they won't allow us to play. When we try we can't play right because we are sick so they throw us out further and tell us we are failures and misfits. I've heard others on this list lament this too. Even my own kids tell me my inability to function is somehow my own fault. I say my house is so hard to live in as we can't ever finish the remodeling and it keeps getting trashed by the grandkids (after the trashing the kids did and their spouses when they lived here) because of all their problems. says " You are the one who tore out the walls, etc. " My gosh, I started the remodel. They had ruined my carpet and with the ADHD we put in wood floors but can't even finish the molding as we have to keep tending to their kids and helping them with finances. I told her that hurts and she tried backing out of what she said, but.....(And no I won't quit helping in places I ways I feel it is appropriate, beleive me we don't just give haphazardly but like we are helping with medical assistant school hoping then she can earn a living for herself and kids so Joe can eventually retire and they won't starve.) I know God is here but He must want me to learn something from all this. I sure wish I weren't so stupid and could get a clue so I wouldn't have to keep going thru this-DA! I tell myself others have worse problems but it doesn't negate my feelings and frustrations. Sorry to vent on the list like this, but I guess I've lost it. S. S. Re: lactic acid >From: GOLYNIE@... > >In a message dated 99-05-04 01:16:19 EDT, you write: > ><< Lynnie, doesn't that just make you so angry that the Dr.s can decide >whether > to do a test or not? It seems to me it should be our choice in most cases. > S. >> > >Dear : > >Yes, your right. But once again it all comes down to the almighty buck! > >Lynnie > >------------------------------------------------------------------------ >G-Shock Sports Watch ** NOW JUST $59.95 ** SHIPPING INCLUDED >Built Tough, Built Cool! Full of Features! Electro Luminescent, Alarm >1/100th of Second Stopwatch, 12/24 Hour, Great for Sports, and more! > http://www.onelist.com/ad/shoptheglobe11 >------------------------------------------------------------------------ >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 May 4, 1998 Report Share Posted May 4, 1998 Thanks Cheri. S. Re: lactic acid >From: School8507@... > > > > >>I do wonder if you know what causes brain swelling and do you have that >> >>also? > > >, > >The only thing I can offer in that regard is that somewhere around 86-88 I >had an incident that occurred and I was told by my doc that my brain swelled. > I'm afraid I don't have much more to add other than that as I really don't >remember much (as I'm sure you can understand given what I was told). >Looking back on that time I think it probably was something similar to a >stroke like event, but I didn't lose my vision as I have tendency to do and >like I did with my officially first diagnosed " transient stroke " . > >Cheri > >------------------------------------------------------------------------ >Star Wars fans are using ONElist to share the fun. >http://www.onelist.com >Are you? > >------------------------------------------------------------------------ >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 May 2, 1999 Report Share Posted May 2, 1999 [This message contained attachments] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 In a message dated 99-05-02 20:52:29 EDT, you write: << Hi , To check lactic acid in the brain, has an MRI scheduled for May 7 and then an MRS on May 20-th. Don't know anything yet, will let you know when we have the results. Thanks for inquiring. Becky P.S. is doing very well!!!!!!!! >> Dear Becky: Wish I had your doc! Amy's doc won't do an MRS. He doesn't " think it will help so why do the test - spend all that $? " Ouch. Good luck. I hope you get lots of info:) Lynnie MOrgan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 In a message dated 99-05-02 20:52:29 EDT, you write: << Hi , To check lactic acid in the brain, has an MRI scheduled for May 7 and then an MRS on May 20-th. Don't know anything yet, will let you know when we have the results. Thanks for inquiring. Becky P.S. is doing very well!!!!!!!! >> Dear Becky: Wish I had your doc! Amy's doc won't do an MRS. He doesn't " think it will help so why do the test - spend all that $? " Ouch. Good luck. I hope you get lots of info:) Lynnie MOrgan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 [This message contained attachments] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 [This message contained attachments] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 >I'm not sure what high > >lactic acid in the brain can do to a person, but I'm sure its not good. > I'm told it is high lactate that is responsible for the burning sensations I have in my brain. It is very clear that extremely high dosages of coq10 makes it better and the assumption is that coq10 can help make ATP. As my peak of coq10 wears off, more brain symptoms worsen with increased burning as well as seeing green, numbness to the face and tongue, facial twitches and fazing in and out with extreme sleepiness. Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 In a message dated 99-05-04 01:16:19 EDT, you write: << Lynnie, doesn't that just make you so angry that the Dr.s can decide whether to do a test or not? It seems to me it should be our choice in most cases. S. >> Dear : Yes, your right. But once again it all comes down to the almighty buck! Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 >I do wonder if you know what causes brain swelling and do you have that > >also? , The only thing I can offer in that regard is that somewhere around 86-88 I had an incident that occurred and I was told by my doc that my brain swelled. I'm afraid I don't have much more to add other than that as I really don't remember much (as I'm sure you can understand given what I was told). Looking back on that time I think it probably was something similar to a stroke like event, but I didn't lose my vision as I have tendency to do and like I did with my officially first diagnosed " transient stroke " . Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 -Hi , Your right 'a doctor is great!! I'm just glad she doesn't have to have a lumbar puncture to check lactic acid in brain, the MRS will not be invasive. Tell your doctor you want this test,I'm not sure what high lactic acid in the brain can do to a person, but I'm sure its not good. If anyone has any info. on lactic acid in the brain, please post. Take care , Becky. Re: lactic acid > > >>From: GOLYNIE@... >> >>In a message dated 99-05-02 20:52:29 EDT, you write: >> >><< Hi , To check lactic acid in the brain, has an MRI scheduled >>for May 7 and then an MRS on May 20-th. Don't know anything yet, will let >you >>know when we have the results. Thanks for inquiring. Becky >> P.S. is doing very well!!!!!!!! >> >> >>Dear Becky: >> >>Wish I had your doc! Amy's doc won't do an MRS. He doesn't " think it will >>help so why do the test - spend all that $? " >>Ouch. >>Good luck. I hope you get lots of info:) >> >>Lynnie MOrgan >> >>------------------------------------------------------------------------ >>Looking for the perfect gift for a friend? >>http://www.onelist.com >>Tell them about ONElist's 130,000 free e-mail communities! >>------------------------------------------------------------------------ >>Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. >> > > >------------------------------------------------------------------------ >Join the Star Wars craze! >http://www.onelist.com >Set up your Star Wars list at 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 November 21, 1999 Report Share Posted November 21, 1999 Barbara, each lab is different and it really depends on what their reference range is. 3 is very low in one lab, and yet mildly elevated in another. Some labs use numbers in the hundreds or thousands - Emory, and I know of another that uses 15 as the cut off for normal, while others still use around 2.5 or 3. So it's very relative to the specific lab. Jeannine blhoward@... wrote: > Can someone out there give me some numbers on their lactic acid levels > and what would be normal numbers? I'm trying to get some idea of > just how high or not so high my son's levels are. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 1999 Report Share Posted November 21, 1999 Barbara, each lab is different and it really depends on what their reference range is. 3 is very low in one lab, and yet mildly elevated in another. Some labs use numbers in the hundreds or thousands - Emory, and I know of another that uses 15 as the cut off for normal, while others still use around 2.5 or 3. So it's very relative to the specific lab. Jeannine blhoward@... wrote: > Can someone out there give me some numbers on their lactic acid levels > and what would be normal numbers? I'm trying to get some idea of > just how high or not so high my son's levels are. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 1999 Report Share Posted November 21, 1999 Barbara, each lab is different and it really depends on what their reference range is. 3 is very low in one lab, and yet mildly elevated in another. Some labs use numbers in the hundreds or thousands - Emory, and I know of another that uses 15 as the cut off for normal, while others still use around 2.5 or 3. So it's very relative to the specific lab. Jeannine blhoward@... wrote: > Can someone out there give me some numbers on their lactic acid levels > and what would be normal numbers? I'm trying to get some idea of > just how high or not so high my son's levels are. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 1999 Report Share Posted November 22, 1999 and all thanks for your reply. My son's doctor says that his lactic acid is only mildly elevated. His has ranged from 21-36 I believe with normal highs being I believe 19. Is this considered only mild by all out there or has someone been told otherwise. I'm dying to get some info and appreciate anything anyone can tell me. Thanks everyone, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 1999 Report Share Posted November 22, 1999 and all thanks for your reply. My son's doctor says that his lactic acid is only mildly elevated. His has ranged from 21-36 I believe with normal highs being I believe 19. Is this considered only mild by all out there or has someone been told otherwise. I'm dying to get some info and appreciate anything anyone can tell me. Thanks everyone, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 > Lactic acid levels will vary depending on > the units used for measurement. Something else - remember, the side effect of muscle use can be lactic acid, very normally. Most people will have elevated LA at times, and it doesn't mean anything other than they have been working out. In the case of blood draws, a tourniquet or a child struggling can cause it to go up too. I haven't ever really seen what " normal " LA should be in an MRS, and whether or not things would impact it (like they do in blood levels). Even if the LA is high, it depends on alot more than the level as to whether the doctors treat it, monitor it or even pay attention to it. My daughter's diagnosis is " inborn error of metabolism resulting in lactic acidemia " and even though it's very high, we don't worry about it or monitor it since it's " normal " for her. I think it depends on the diagnosis, other factors, etc. and just because it is high does not mean you should worry. This is one of those things that you definitely should follow along with what your doctors want you to do, and not be alarmed that others get treated differently. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 1999 Report Share Posted December 2, 1999 > Lactic acid levels will vary depending on > the units used for measurement. Something else - remember, the side effect of muscle use can be lactic acid, very normally. Most people will have elevated LA at times, and it doesn't mean anything other than they have been working out. In the case of blood draws, a tourniquet or a child struggling can cause it to go up too. I haven't ever really seen what " normal " LA should be in an MRS, and whether or not things would impact it (like they do in blood levels). Even if the LA is high, it depends on alot more than the level as to whether the doctors treat it, monitor it or even pay attention to it. My daughter's diagnosis is " inborn error of metabolism resulting in lactic acidemia " and even though it's very high, we don't worry about it or monitor it since it's " normal " for her. I think it depends on the diagnosis, other factors, etc. and just because it is high does not mean you should worry. This is one of those things that you definitely should follow along with what your doctors want you to do, and not be alarmed that others get treated differently. Kathy Quote Link to comment Share on other sites More sharing options...
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