Guest guest Posted December 10, 2004 Report Share Posted December 10, 2004 Yes, I think I recall seeing a movie about that in 8th grade or something...I don't know, it's all so fuzzy. What can I say, working & taking care of kiddos all day and still so passionate...(yeah, right) hehehehe > I've heard rumors there are things a person can use to help prevent such things......heeheehee > s. > > > LOL! " not exactly going out of my way " !! Ha! Wish I could say that! > I always wondered what it was like to *decide* to have another baby! > My DH looks at me and BANGO, oh look, another gift on the way!!! > , mommy of: > Guinevere, on, Ava (dear God please can we stop here??!!?!?) > --- In > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 Heidi, I know everyone is different, but I know when I finally got a dx after 10 years, I was just glad to know what I was dealing with so that I could best take care of myself for the future, both for myself and my family. Are you taking the mito cocktail yet? If not, you may feel better after starting it for a while. Good luck, and let us know how things go with you appointment with Dr. Sims. heidicoleman2002 wrote: >So, last week I received a clinical dx of mito from both neuro and >metabolics. So I guess I'm in the right place. Neuro said that I >don't have MS and my brain MRI shows no evidence of stroke so the >episodes could have been SLE's. Bloodwork and exam show muscle >disease. Carnitine deficiency plus other body systems and funky labs >plus family hx give enough weight to a clinical dx. Labs for DNA and >other funky things were drawn Monday so we'll see what comes out of >it. I may go down to Atlanta for a muscle bx if we don't find it in >blood. Not sure if it's dominant or maternally inherited because ther >are shockingly few boys in the family. Several stillbirths and >miscarriages that were boys though. Go figure. > >The theory about the sudden terrible muscle problems is this: I've had >this underlying myopathy all my life, since you can't change your >genes. I've compensated well most of the time but the drug reaction to >metformin (which happens in people with mito, go figure) destroyed >healthy muscle and left me with more abnormal, affected muscle trying >to do the job. So now I need to find out how to condition this lousy >muscle and get on with life. I have PT and OT evals next week. I'll >have a hearing test, a neuro-ophthalmology exam, and a sleep study. It >will make for some busy weeks but we'll get more info. I really need >to figure out if this will be a short-term thing or if I should try to >modify my work (although right now I can't write so I can't work at >all). > >The diabetes is under control with insulin 4 times a day and blood >sugar checks 4-7 times a day. Still waiting for the blood work to see >if it's type 1 or2. > >Heidi > >So now I have an appt with Dr. Sims at MGH. I've heard conflicting >reviews but hopefully it won't be a waste of time. > > > > > > >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 April 10, 2005 Report Share Posted April 10, 2005 Please be aware when choosing your CoQ10 that there are a lot of companies cutting back on the actual amount of CoQ10 in their products as the cost of getting it has gone up from 800 to 4000 for the same amount for the manufacturers. You and others may not be getting what you think you are. I'm glad to hear you are starting things slowly. I would suggest you also keep a log of meds, dosage and any impact, positive or negative you note at each dosage level. Are you taking the Rx carnitor, or just OTC carnitine? What dose are you on? heidicoleman2002 wrote: >-Hi >I've been on carnitine for a month, they drew blood to check my >level. I don't notice a difference yet so it's probably the wrong >dose. I'm starting riboflavin now and Co Q10 in a few weeks, and >gradually increasing the dose to see if there's an effect. > >The odd thing is that I have plenty of mental energy, it's purely a >muscle problem at this point. I feel like I should be able to do >things with my hands and am consistently surprised when I can't get >them to do what I want. >Heidi > >-- In , wrote: > > >>Heidi, >> >>I know everyone is different, but I know when I finally got a dx >> >> >after > > >>10 years, I was just glad to know what I was dealing with so that I >>could best take care of myself for the future, both for myself and >> >> >my > > >>family. >> >>Are you taking the mito cocktail yet? If not, you may feel better >> >> >after > > >>starting it for a while. Good luck, and let us know how things go >> >> >with > > >>you appointment with Dr. Sims. >> >> >> >> > > > > > > > >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 April 10, 2005 Report Share Posted April 10, 2005 Heidi I'm sorry you have the diagnosis, but glad you are getting some answers. I don't know what kind of work you do, but I was able to get a laptop computer as an ADA accomodation which allowed me to continue working another 7 years. laurie > > Please be aware when choosing your CoQ10 that there are a lot of > companies cutting back on the actual amount of CoQ10 in their products > as the cost of getting it has gone up from 800 to 4000 for the same > amount for the manufacturers. You and others may not be getting what > you think you are. I'm glad to hear you are starting things slowly. I > would suggest you also keep a log of meds, dosage and any impact, > positive or negative you note at each dosage level. Are you taking the > Rx carnitor, or just OTC carnitine? What dose are you on? > > > > > > heidicoleman2002 wrote: > > >-Hi > >I've been on carnitine for a month, they drew blood to check my > >level. I don't notice a difference yet so it's probably the wrong > >dose. I'm starting riboflavin now and Co Q10 in a few weeks, and > >gradually increasing the dose to see if there's an effect. > > > >The odd thing is that I have plenty of mental energy, it's purely a > >muscle problem at this point. I feel like I should be able to do > >things with my hands and am consistently surprised when I can't get > >them to do what I want. > >Heidi > > > >-- In , wrote: > > > > > >>Heidi, > >> > >>I know everyone is different, but I know when I finally got a dx > >> > >> > >after > > > > > >>10 years, I was just glad to know what I was dealing with so that I > >>could best take care of myself for the future, both for myself and > >> > >> > >my > > > > > >>family. > >> > >>Are you taking the mito cocktail yet? If not, you may feel better > >> > >> > >after > > > > > >>starting it for a while. Good luck, and let us know how things go > >> > >> > >with > > > > > >>you appointment with Dr. Sims. > >> > >> > >> > >> > > > > > > > > > > > > > > > >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 April 10, 2005 Report Share Posted April 10, 2005 I'm on prescription carnitor, 990mg a day. I believe I'll be increased to 990mg 3 times a day after the levels come back. They wanted to see if I could absorb it. Those big pills are hard to swallow. The riboflavin will be OTC and the Co Q10, hopefully insurance will pay for Qgel. Our insurance pays for 's. That's a good idea, keeping track of the meds and impact. Thanks Heidi > > > > > >>Heidi, > >> > >>I know everyone is different, but I know when I finally got a dx > >> > >> > >after > > > > > >>10 years, I was just glad to know what I was dealing with so that I > >>could best take care of myself for the future, both for myself and > >> > >> > >my > > > > > >>family. > >> > >>Are you taking the mito cocktail yet? If not, you may feel better > >> > >> > >after > > > > > >>starting it for a while. Good luck, and let us know how things go > >> > >> > >with > > > > > >>you appointment with Dr. Sims. > >> > >> > >> > >> > > > > > > > > > > > > > > > >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 April 10, 2005 Report Share Posted April 10, 2005 -Thanks , I've thought about that. At least I could work a little. I'm a developmental nurse and do intakes and assessments for Early Intervention. I don't think I'd be able to get down on the floor but I could observe if another clinician did the playing (we work in teams). Heidi -- In , Laurie Fitzgerald wrote: > Heidi > > I'm sorry you have the diagnosis, but glad you are getting some answers. > > I don't know what kind of work you do, but I was able to get a laptop > computer as an ADA accomodation which allowed me to continue working > another 7 years. > > laurie > > > > > > > Please be aware when choosing your CoQ10 that there are a lot of > > companies cutting back on the actual amount of CoQ10 in their products > > as the cost of getting it has gone up from 800 to 4000 for the same > > amount for the manufacturers. You and others may not be getting what > > you think you are. I'm glad to hear you are starting things slowly. I > > would suggest you also keep a log of meds, dosage and any impact, > > positive or negative you note at each dosage level. Are you taking the > > Rx carnitor, or just OTC carnitine? What dose are you on? > > > > > > > > > > > > heidicoleman2002 wrote: > > > > >-Hi > > >I've been on carnitine for a month, they drew blood to check my > > >level. I don't notice a difference yet so it's probably the wrong > > >dose. I'm starting riboflavin now and Co Q10 in a few weeks, and > > >gradually increasing the dose to see if there's an effect. > > > > > >The odd thing is that I have plenty of mental energy, it's purely a > > >muscle problem at this point. I feel like I should be able to do > > >things with my hands and am consistently surprised when I can't get > > >them to do what I want. > > >Heidi > > > > > >-- In , wrote: > > > > > > > > >>Heidi, > > >> > > >>I know everyone is different, but I know when I finally got a dx > > >> > > >> > > >after > > > > > > > > >>10 years, I was just glad to know what I was dealing with so that I > > >>could best take care of myself for the future, both for myself and > > >> > > >> > > >my > > > > > > > > >>family. > > >> > > >>Are you taking the mito cocktail yet? If not, you may feel better > > >> > > >> > > >after > > > > > > > > >>starting it for a while. Good luck, and let us know how things go > > >> > > >> > > >with > > > > > > > > >>you appointment with Dr. Sims. > > >> > > >> > > >> > > >> > > > > > > > > > > > > > > > > > > > > > > > >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 April 10, 2005 Report Share Posted April 10, 2005 Heidi, I'm sorry you have gotten this diagnosis. I am glad that some answers are coming your way though. I hope your coming appointments go well. I will be interested in your opinion of Dr. Sims. I am supposed to see her in June. Smiles, a On Sun, 10 Apr 2005 11:57:52 -0000 " heidicoleman2002 " mom2colemankidz3@...> writes: So, last week I received a clinical dx of mito from both neuro and metabolics. So I guess I'm in the right place. Neuro said that I don't have MS and my brain MRI shows no evidence of stroke so the episodes could have been SLE's. Bloodwork and exam show muscle disease. Carnitine deficiency plus other body systems and funky labs plus family hx give enough weight to a clinical dx. Labs for DNA and other funky things were drawn Monday so we'll see what comes out of it. I may go down to Atlanta for a muscle bx if we don't find it in blood. Not sure if it's dominant or maternally inherited because ther are shockingly few boys in the family. Several stillbirths and miscarriages that were boys though. Go figure. The theory about the sudden terrible muscle problems is this: I've had this underlying myopathy all my life, since you can't change your genes. I've compensated well most of the time but the drug reaction to metformin (which happens in people with mito, go figure) destroyed healthy muscle and left me with more abnormal, affected muscle trying to do the job. So now I need to find out how to condition this lousy muscle and get on with life. I have PT and OT evals next week. I'll have a hearing test, a neuro-ophthalmology exam, and a sleep study. It will make for some busy weeks but we'll get more info. I really need to figure out if this will be a short-term thing or if I should try to modify my work (although right now I can't write so I can't work at all). The diabetes is under control with insulin 4 times a day and blood sugar checks 4-7 times a day. Still waiting for the blood work to see if it's type 1 or2. Heidi So now I have an appt with Dr. Sims at MGH. I've heard conflicting reviews but hopefully it won't be a waste of time. Quote Link to comment Share on other sites More sharing options...
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