Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Hello everyone, My name is [too!] and I finally got a partial dx last week. The neuro said I had a mitochondrial disease, but at this point they really don't know which one. More testing will be needed to pin it down. Anyway, it has taken the medical community only 25 years to get this figured out. Though I did read where they only started dx'ing them in 1988...Is that true? Not only do I have Mito, I also have COPD [mostly because of an untreated fungal infection]..first time I complained about breathing problems, my GP doc said I was just overweight and out of shape... Overweight ya... but at the time, in reasonably good shape. Needless to say, he had to eat his words. I love it when that happens..yet I would rather he had been right. And the same neuro clinic also discovered that I had Hashimoto's thyroiditis last November, a lovely little auto-immune disease that causes your thyroid to cycle from hypo to hyper until it finally kills your thyroid. Anyway, they put me on thyroid meds and waited a few months to see if the thyroid problem was causing all the symptoms. It wasn't.. but many of them did disapear or improve so they didn't have as many symptons to deal with. But you know what is so hysterical? The neuro clinic said they were going to do a ischemic muscle test a few months ago, but for some reason I had to hassle them to set it up. Something told me I needed to have that test done... What is it with docs that you the patient have to educate yourself and then tell them how to do their jobs? So.. the symtoms that did not go away with thyroid treatment was myoclonus, dystonic spasms, muscle pain, and muscle weakness. Oh yea... and neuropathy.. all of it progressive.. Presently I am only taking baclofen and magnesium malate for the spasms. They did try a few meds for the myoclonus without any success, so I told them the myoclonus didn't hurt and would they please concentrate on the spasms that did!!!!! Finally, I got the baclofen. I am to start on 1200 mgs of Q10 in a few days... they wanted me to get the Vitaline brand... 200 bucks for a one month supply... but if it works it is entirely possible I could try a slightly less expensive brand or if they can prove I need it... get insurance to pay for it. I actually managed to get SS Disabilitly before the mito dx.. not quite sure how since they are so notorius about turning you down and trying to wear you down before they finally approve it... but I got it. My medicare starts in August..none to soon for me either.... I kept hoping that they would figure out what was wrong and it could be easily fixed... no such luck.. so I guess I best be glad I got my disabiltity. Anyway, along the way they would suggest a few possible dx's so I would check them out and of course the best place to get info is from the Internet groups from people that are already dealing with the problem... I would end up joining the groups and then leaving them once I was assured that was not my problem. Guess I am finally home now. But I have to say, Mito never once was considered by me or the docs... even these neuros... I think it came as a bit of shock to all. Family history is sketchy on this because where we think my mother has it... the docs probably won't test her because she is now in her 70's and they blame every thing on the tubuculer mennigitis she had as a baby and the resultant damage done. One of her brothers may have had it, but he died a few years ago. My grandmother never showed symtoms but most of her siblings died relatively young from heart disease and her grandmother lived a long and healthy life..she buried 3 husbands [no I don't think she was a black widow]. Only her last outlived her and he was 20 years her junior. I have 3 sisters and I am pretty sure one of them also has this... she has heart involvement, diabetes and also has hasimotos and she has been experiencing weakness in her thigh muscles. Looking forward to getting to know you and of course picking your brains for all of your Mito knowledge. Cody _______________________________________________ Join Excite! - http://www.excite.com The most personalized portal on the Web! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 C. Welcome to the group. I am glad you found a home, even if we would all rather not have to be here. It sounds like you finally have a good neuro. laurie > > > > > > > Hello everyone, My name is [too!] and I finally got a partial dx last > week. The neuro said I had a mitochondrial disease, but at this point they > really don't know which one. More testing will be needed to pin it down. > Anyway, it has taken the medical community only 25 years to get this figured > out. Though I did read where they only started dx'ing them in 1988...Is that > true? Not only do I have Mito, I also have COPD [mostly because of an > untreated fungal infection]..first time I complained about breathing > problems, my GP doc said I was just overweight and out of shape... > Overweight ya... but at the time, in reasonably good shape. Needless to say, > he had to eat his words. I love it when that happens..yet I would rather he > had been right. And the same neuro clinic also discovered that I had > Hashimoto's thyroiditis last November, a lovely little auto-immune disease > that causes your thyroid to cycle from hypo to hyper until it finally kills > your thyroid. Anyway, > they put me on thyroid meds and waited a few months to see if the thyroid > problem was causing all the symptoms. It wasn't.. but many of them did > disapear or improve so they didn't have as many symptons to deal with. But > you know what is so hysterical? The neuro clinic said they were going to do > a ischemic muscle test a few months ago, but for some reason I had to hassle > them to set it up. Something told me I needed to have that test done... What > is it with docs that you the patient have to educate yourself and then tell > them how to do their jobs? So.. the symtoms that did not go away with > thyroid treatment was myoclonus, dystonic spasms, muscle pain, and muscle > weakness. Oh yea... and neuropathy.. all of it progressive.. Presently I am > only taking baclofen and magnesium malate for the spasms. They did try a few > meds for the myoclonus without any success, so I told them the myoclonus > didn't hurt and would they please concentrate on the spasms that did!!!!! > Finally, I > got the baclofen. I am to start on 1200 mgs of Q10 in a few days... they > wanted me to get the Vitaline brand... 200 bucks for a one month supply... > but if it works it is entirely possible I could try a slightly less > expensive brand or if they can prove I need it... get insurance to pay for > it. I actually managed to get SS Disabilitly before the mito dx.. not quite > sure how since they are so notorius about turning you down and trying to > wear you down before they finally approve it... but I got it. My medicare > starts in August..none to soon for me either.... I kept hoping that they > would figure out what was wrong and it could be easily fixed... no such > luck.. so I guess I best be glad I got my disabiltity. Anyway, along the way > they would suggest a few possible dx's so I would check them out and of > course the best place to get info is from the Internet groups from people > that are already dealing with the problem... I would end up joining the > groups and then leaving them > once I was assured that was not my problem. Guess I am finally home now. > But I have to say, Mito never once was considered by me or the docs... even > these neuros... I think it came as a bit of shock to all. Family history is > sketchy on this because where we think my mother has it... the docs probably > won't test her because she is now in her 70's and they blame every thing on > the tubuculer mennigitis she had as a baby and the resultant damage done. > One of her brothers may have had it, but he died a few years ago. My > grandmother never showed symtoms but most of her siblings died relatively > young from heart disease and her grandmother lived a long and healthy > life..she buried 3 husbands [no I don't think she was a black widow]. Only > her last outlived her and he was 20 years her junior. I have 3 sisters and I > am pretty sure one of them also has this... she has heart involvement, > diabetes and also has hasimotos and she has been experiencing weakness in > her thigh muscles. > Looking forward to getting to know you and of course picking your brains > for all of your Mito knowledge. Cody > > _______________________________________________ > Join Excite! - http://www.excite.com > The most personalized portal on the Web! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Welcome to our group. I have found one of the most helpful sites, and the people are fantastic and are always there for you. It is nice having someone to relate too with this disease, since it is so different in many people. I am learning what I can, and the fact that these chat groups are here is even better, just because you can discuss you symptoms and almost always some one has experienced it and can help in the matter with their suggestions. So glad you can now have us as friends. --- Laurie Fitzgerald laurie.fitzgerald@...> wrote: > C. > > Welcome to the group. I am glad you found a home, > even if we would all > rather not have to be here. It sounds like you > finally have a good > neuro. > > laurie > > > > > > > > > > > > > > > > Hello everyone, My name is [too!] and I > finally got a partial dx last > > week. The neuro said I had a mitochondrial > disease, but at this point they > > really don't know which one. More testing will be > needed to pin it down. > > Anyway, it has taken the medical community only 25 > years to get this figured > > out. Though I did read where they only started > dx'ing them in 1988...Is that > > true? Not only do I have Mito, I also have COPD > [mostly because of an > > untreated fungal infection]..first time I > complained about breathing > > problems, my GP doc said I was just overweight and > out of shape... > > Overweight ya... but at the time, in reasonably > good shape. Needless to say, > > he had to eat his words. I love it when that > happens..yet I would rather he > > had been right. And the same neuro clinic also > discovered that I had > > Hashimoto's thyroiditis last November, a lovely > little auto-immune disease > > that causes your thyroid to cycle from hypo to > hyper until it finally kills > > your thyroid. Anyway, > > they put me on thyroid meds and waited a few > months to see if the thyroid > > problem was causing all the symptoms. It wasn't.. > but many of them did > > disapear or improve so they didn't have as many > symptons to deal with. But > > you know what is so hysterical? The neuro clinic > said they were going to do > > a ischemic muscle test a few months ago, but for > some reason I had to hassle > > them to set it up. Something told me I needed to > have that test done... What > > is it with docs that you the patient have to > educate yourself and then tell > > them how to do their jobs? So.. the symtoms that > did not go away with > > thyroid treatment was myoclonus, dystonic spasms, > muscle pain, and muscle > > weakness. Oh yea... and neuropathy.. all of it > progressive.. Presently I am > > only taking baclofen and magnesium malate for the > spasms. They did try a few > > meds for the myoclonus without any success, so I > told them the myoclonus > > didn't hurt and would they please concentrate on > the spasms that did!!!!! > > Finally, I > > got the baclofen. I am to start on 1200 mgs of > Q10 in a few days... they > > wanted me to get the Vitaline brand... 200 bucks > for a one month supply... > > but if it works it is entirely possible I could > try a slightly less > > expensive brand or if they can prove I need it... > get insurance to pay for > > it. I actually managed to get SS Disabilitly > before the mito dx.. not quite > > sure how since they are so notorius about turning > you down and trying to > > wear you down before they finally approve it... > but I got it. My medicare > > starts in August..none to soon for me either.... I > kept hoping that they > > would figure out what was wrong and it could be > easily fixed... no such > > luck.. so I guess I best be glad I got my > disabiltity. Anyway, along the way > > they would suggest a few possible dx's so I would > check them out and of > > course the best place to get info is from the > Internet groups from people > > that are already dealing with the problem... I > would end up joining the > > groups and then leaving them > > once I was assured that was not my problem. Guess > I am finally home now. > > But I have to say, Mito never once was considered > by me or the docs... even > > these neuros... I think it came as a bit of shock > to all. Family history is > > sketchy on this because where we think my mother > has it... the docs probably > > won't test her because she is now in her 70's and > they blame every thing on > > the tubuculer mennigitis she had as a baby and the > resultant damage done. > > One of her brothers may have had it, but he died a > few years ago. My > > grandmother never showed symtoms but most of her > siblings died relatively > > young from heart disease and her grandmother lived > a long and healthy > > life..she buried 3 husbands [no I don't think she > was a black widow]. Only > > her last outlived her and he was 20 years her > junior. I have 3 sisters and I > > am pretty sure one of them also has this... she > has heart involvement, > > diabetes and also has hasimotos and she has been > experiencing weakness in > > her thigh muscles. > > Looking forward to getting to know you and of > course picking your brains > > for all of your Mito knowledge. Cody > > > > _______________________________________________ > > Join Excite! - http://www.excite.com > > The most personalized portal on the Web! > > > > [Non-text portions of this message have been > removed] > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2006 Report Share Posted July 9, 2006 , My grandmother lived to 95 with only diabetes. But my mother died in 1988 from what they thought was epilepsy and borderline diabetic. My sister died in 1996 at the age of 33. On 1994 she had a seizure that put her in a 4 day coma. Doctors could not figure out why it happened. She did it again in 1996, a 4 day coma. That is when someone suggested a doctor in Milwaukee. They had moved in 1995 to a small town 1 1/2 hrs from Milwaukee. Funny thing, in 1994 they lived 1/2 hr from Milwaukee and was in a hospital that he saw a few patients at. Anyway, she was the athletic one of the family, petite at 5 ft and 105 lbs. No known health problems. My aunt died in 2000 at 56. She just collapsed one day in church. She was my height and weight, 5 ft 3 " , about 140 lbs and was diabetic like me. My son also has mild symptoms, mainly severe constipation problems from dismobility. I mainly have the diabetes, high blood pressure, and leg muscle weakness. My sister, myself, and my son all have MELAS confirmed. I think how the disease manifests itself depends on the number of bad cells vs good cells. Also for me " overdoing it " as in walking too much, doing hiking, hot weather activities, etc all cause setbacks. Janet Sample Finally Home Hello everyone, My name is [too!] and I finally got a partial dx last week. The neuro said I had a mitochondrial disease, but at this point they really don't know which one. More testing will be needed to pin it down. Anyway, it has taken the medical community only 25 years to get this figured out. Though I did read where they only started dx'ing them in 1988...Is that true? Not only do I have Mito, I also have COPD [mostly because of an untreated fungal infection]..first time I complained about breathing problems, my GP doc said I was just overweight and out of shape... Overweight ya... but at the time, in reasonably good shape. Needless to say, he had to eat his words. I love it when that happens..yet I would rather he had been right. And the same neuro clinic also discovered that I had Hashimoto's thyroiditis last November, a lovely little auto-immune disease that causes your thyroid to cycle from hypo to hyper until it finally kills your thyroid. Anyway, they put me on thyroid meds and waited a few months to see if the thyroid problem was causing all the symptoms. It wasn't.. but many of them did disapear or improve so they didn't have as many symptons to deal with. But you know what is so hysterical? The neuro clinic said they were going to do a ischemic muscle test a few months ago, but for some reason I had to hassle them to set it up. Something told me I needed to have that test done... What is it with docs that you the patient have to educate yourself and then tell them how to do their jobs? So.. the symtoms that did not go away with thyroid treatment was myoclonus, dystonic spasms, muscle pain, and muscle weakness. Oh yea... and neuropathy.. all of it progressive.. Presently I am only taking baclofen and magnesium malate for the spasms. They did try a few meds for the myoclonus without any success, so I told them the myoclonus didn't hurt and would they please concentrate on the spasms that did!!!!! Finally, I got the baclofen. I am to start on 1200 mgs of Q10 in a few days... they wanted me to get the Vitaline brand... 200 bucks for a one month supply... but if it works it is entirely possible I could try a slightly less expensive brand or if they can prove I need it... get insurance to pay for it. I actually managed to get SS Disabilitly before the mito dx.. not quite sure how since they are so notorius about turning you down and trying to wear you down before they finally approve it... but I got it. My medicare starts in August..none to soon for me either.... I kept hoping that they would figure out what was wrong and it could be easily fixed... no such luck.. so I guess I best be glad I got my disabiltity. Anyway, along the way they would suggest a few possible dx's so I would check them out and of course the best place to get info is from the Internet groups from people that are already dealing with the problem... I would end up joining the groups and then leaving them once I was assured that was not my problem. Guess I am finally home now. But I have to say, Mito never once was considered by me or the docs... even these neuros... I think it came as a bit of shock to all. Family history is sketchy on this because where we think my mother has it... the docs probably won't test her because she is now in her 70's and they blame every thing on the tubuculer mennigitis she had as a baby and the resultant damage done. One of her brothers may have had it, but he died a few years ago. My grandmother never showed symtoms but most of her siblings died relatively young from heart disease and her grandmother lived a long and healthy life..she buried 3 husbands [no I don't think she was a black widow]. Only her last outlived her and he was 20 years her junior. I have 3 sisters and I am pretty sure one of them also has this... she has heart involvement, diabetes and also has hasimotos and she has been experiencing weakness in her thigh muscles. Looking forward to getting to know you and of course picking your brains for all of your Mito knowledge. Cody _______________________________________________ Join Excite! - http://www.excite.com The most personalized portal on the Web! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 , Just curious, do you know why they recommended the Vitaline brand of CoQ10? Do you know where you can get Vitaline at the most reasonable price available? Did you decide to go with Vitaline? Still trying to decide whether to go with less expensive CoQ10 or more expensive brands, or Idebenone instead. Vitaline was recommended somewhere else, but not sure why. Thanks, Randall > > Hello everyone, My name is [too!] and I finally got a partial dx last week. The neuro said I had a mitochondrial disease, but at this point they really don't know which one. More testing will be needed to pin it down. Anyway, it has taken the medical community only 25 years to get this figured out. Though I did read where they only started dx'ing them in 1988...Is that true? Not only do I have Mito, I also have COPD [mostly because of an untreated fungal infection]..first time I complained about breathing problems, my GP doc said I was just overweight and out of shape... Overweight ya... but at the time, in reasonably good shape. Needless to say, he had to eat his words. I love it when that happens..yet I would rather he had been right. And the same neuro clinic also discovered that I had Hashimoto's thyroiditis last November, a lovely little auto-immune disease that causes your thyroid to cycle from hypo to hyper until it finally kills your thyroid. Anyway, > they put me on thyroid meds and waited a few months to see if the thyroid problem was causing all the symptoms. It wasn't.. but many of them did disapear or improve so they didn't have as many symptons to deal with. But you know what is so hysterical? The neuro clinic said they were going to do a ischemic muscle test a few months ago, but for some reason I had to hassle them to set it up. Something told me I needed to have that test done... What is it with docs that you the patient have to educate yourself and then tell them how to do their jobs? So.. the symtoms that did not go away with thyroid treatment was myoclonus, dystonic spasms, muscle pain, and muscle weakness. Oh yea... and neuropathy.. all of it progressive.. Presently I am only taking baclofen and magnesium malate for the spasms. They did try a few meds for the myoclonus without any success, so I told them the myoclonus didn't hurt and would they please concentrate on the spasms that did!!!!! Finally, I > got the baclofen. I am to start on 1200 mgs of Q10 in a few days... they wanted me to get the Vitaline brand... 200 bucks for a one month supply... but if it works it is entirely possible I could try a slightly less expensive brand or if they can prove I need it... get insurance to pay for it. I actually managed to get SS Disabilitly before the mito dx.. not quite sure how since they are so notorius about turning you down and trying to wear you down before they finally approve it... but I got it. My medicare starts in August..none to soon for me either.... I kept hoping that they would figure out what was wrong and it could be easily fixed... no such luck.. so I guess I best be glad I got my disabiltity. Anyway, along the way they would suggest a few possible dx's so I would check them out and of course the best place to get info is from the Internet groups from people that are already dealing with the problem... I would end up joining the groups and then leaving them > once I was assured that was not my problem. Guess I am finally home now. But I have to say, Mito never once was considered by me or the docs... even these neuros... I think it came as a bit of shock to all. Family history is sketchy on this because where we think my mother has it... the docs probably won't test her because she is now in her 70's and they blame every thing on the tubuculer mennigitis she had as a baby and the resultant damage done. One of her brothers may have had it, but he died a few years ago. My grandmother never showed symtoms but most of her siblings died relatively young from heart disease and her grandmother lived a long and healthy life..she buried 3 husbands [no I don't think she was a black widow]. Only her last outlived her and he was 20 years her junior. I have 3 sisters and I am pretty sure one of them also has this... she has heart involvement, diabetes and also has hasimotos and she has been experiencing weakness in her thigh muscles. > Looking forward to getting to know you and of course picking your brains for all of your Mito knowledge. Cody > > _______________________________________________ > Join Excite! - http://www.excite.com > The most personalized portal on the Web! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 From Joanne (not )...the issues are purity and the amount of active ingredient in the product. We use neither Vitaline or Tischon, but use Solgar because Medicaid has bneen paying for it AND the capsules have NO added fat which our daughters can't metabolize. None of the better products are cheap. Our docs monitor blood levels for clinical response and adjust the dose based on response. In our home, we use over 5,000 mg/day so the cost is significant. Somewhere on line is a graph from a copmany that did an actual comparison of products and many (evven some of the less expensive ones) had the correct percent of coenzyme Q10 in the compound. , Just curious, do you know why they recommended the Vitaline brand of CoQ10? Do you know where you can get Vitaline at the most reasonable price available? Did you decide to go with Vitaline? Still trying to decide whether to go with less expensive CoQ10 or more expensive brands, or Idebenone instead. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 According to the Doc.. they wanted me to use Vitaline because it was the formulation that was used in clinical trials and if it didn't work they would know it was because I didn't need it. By using another brand they couldn't be sure why it didn't work. Was it because I didn't need it or because the formulation was defective??? As far as I know the only place to get it is from Vitaline itself. http://www.vitalineformulary.com/ I have also found a product that claims it is US Pharmacutical grade [usp], made by " NOW " . It is 2/3 the price of Vitaline..just not sure USP grading is enough as Vitaline and Qgel claim it is how they process it that makes the difference. Qgel site: http://www.epic4health.com/noname.html Now distributor: http://www.bodybuilding.com/store/now/coq400.html They also carry a lot of other brands. Now web page: http://www.nowfoods.com/index.php/CoQ10/Vitamins-Supplements/cat_id/753 The other thing I don't know is if it works... Do I have to keep taking 1200 mgs or will a lower dose work... I don't have another neuro appointment until August 17th or so.. CodyFrom: startfromscratch05 To: @...: Wed, 12 Jul 2006 16:40:08 -0000Subject: Re: Finally Home ,Just curious, do you know why they recommended the Vitaline brand ofCoQ10? Do you know where you can get Vitaline at the most reasonableprice available? Did you decide to go with Vitaline?Still trying to decide whether to go with less expensive CoQ10 or moreexpensive brands, or Idebenone instead. Vitaline was recommendedsomewhere else, but not sure why.Thanks,Randall>> Hello everyone, My name is [too!] and I finally got a partialdx last week. The neuro said I had a mitochondrial disease, but at thispoint they really don't know which one. More testing will be needed topin it down. Anyway, it has taken the medical community only 25 yearsto get this figured out. Though I did read where they only starteddx'ing them in 1988...Is that true? Not only do I have Mito, I also haveCOPD [mostly because of an untreated fungal infection]..first time Icomplained about breathing problems, my GP doc said I was justoverweight and out of shape... Overweight ya... but at the time, inreasonably good shape. Needless to say, he had to eat his words. Ilove it when that happens..yet I would rather he had been right. Andthe same neuro clinic also discovered that I had Hashimoto's thyroiditislast November, a lovely little auto-immune disease that causes yourthyroid to cycle from hypo to hyper until it finally kills your thyroid.Anyway,> they put me on thyroid meds and waited a few months to see if thethyroid problem was causing all the symptoms. It wasn't.. but many ofthem did disapear or improve so they didn't have as many symptons todeal with. But you know what is so hysterical? The neuro clinic saidthey were going to do a ischemic muscle test a few months ago, but forsome reason I had to hassle them to set it up. Something told me Ineeded to have that test done... What is it with docs that you thepatient have to educate yourself and then tell them how to do theirjobs? So.. the symtoms that did not go away with thyroid treatment wasmyoclonus, dystonic spasms, muscle pain, and muscle weakness. Oh yea...and neuropathy.. all of it progressive.. Presently I am only takingbaclofen and magnesium malate for the spasms. They did try a few medsfor the myoclonus without any success, so I told them the myoclonusdidn't hurt and would they please concentrate on the spasms thatdid!!!!! Finally, I> got the baclofen. I am to start on 1200 mgs of Q10 in a few days...they wanted me to get the Vitaline brand... 200 bucks for a one monthsupply... but if it works it is entirely possible I could try a slightlyless expensive brand or if they can prove I need it... get insurance topay for it. I actually managed to get SS Disabilitly before the mitodx.. not quite sure how since they are so notorius about turning youdown and trying to wear you down before they finally approve it... but Igot it. My medicare starts in August..none to soon for me either.... Ikept hoping that they would figure out what was wrong and it could beeasily fixed... no such luck.. so I guess I best be glad I got mydisabiltity. Anyway, along the way they would suggest a few possibledx's so I would check them out and of course the best place to get infois from the Internet groups from people that are already dealing withthe problem... I would end up joining the groups and then leaving them> once I was assured that was not my problem. Guess I am finally homenow. But I have to say, Mito never once was considered by me or thedocs... even these neuros... I think it came as a bit of shock to all.Family history is sketchy on this because where we think my mother hasit... the docs probably won't test her because she is now in her 70'sand they blame every thing on the tubuculer mennigitis she had as a babyand the resultant damage done. One of her brothers may have had it, buthe died a few years ago. My grandmother never showed symtoms but mostof her siblings died relatively young from heart disease and hergrandmother lived a long and healthy life..she buried 3 husbands [no Idon't think she was a black widow]. Only her last outlived her and hewas 20 years her junior. I have 3 sisters and I am pretty sure one ofthem also has this... she has heart involvement, diabetes and also hashasimotos and she has been experiencing weakness in her thigh muscles.> Looking forward to getting to know you and of course picking yourbrains for all of your Mito knowledge. Cody>> _______________________________________________> Join Excite! - http://www.excite.com> The most personalized portal on the Web!>>> [Non-text portions of this message have been removed]> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 It sometimes takes several months to really know how your body is going to react to CoQ. The recommended dose of 1200 mg. might be based on the large study done with Parkinson's Disease. They had groups of people on different amounts (I think 800, 1000 and 1200) and didn't find any positive affect until the dosage was at the 1200 mg. level. I think this study used the Vitaline (they provided it free for the study). I take a bit less as I take the Tishcon Q-gel. I didn't notice anything until I got to the high level. I would suggest starting at a lower dose and working up, so your body can adjust. laurie > > > > > > > According to the Doc.. they wanted me to use Vitaline because it was the > formulation that was used in clinical trials and if it didn't work they > would know it was because I didn't need it. By using another brand they > couldn't be sure why it didn't work. Was it because I didn't need it or > because the formulation was defective??? As far as I know the only place to > get it is from Vitaline itself. http://www.vitalineformulary.com/ I have > also found a product that claims it is US Pharmacutical grade [usp], made by > " NOW " . It is 2/3 the price of Vitaline..just not sure USP grading is enough > as Vitaline and Qgel claim it is how they process it that makes the > difference. Qgel site: http://www.epic4health.com/noname.html Now > distributor: http://www.bodybuilding.com/store/now/coq400.html They also > carry a lot of other brands. Now web page: > http://www.nowfoods.com/index.php/CoQ10/Vitamins-Supplements/cat_id/753 The > other thing I don't know is if it works... Do I have to keep > taking 1200 mgs or will a lower dose work... I don't have another neuro > appointment until August 17th or so.. CodyFrom: > startfromscratch05 To: > @...: Wed, 12 Jul 2006 16:40:08 -0000Subject: > Re: Finally Home > > ,Just curious, do you know why they recommended the Vitaline brand > ofCoQ10? Do you know where you can get Vitaline at the most reasonableprice > available? Did you decide to go with Vitaline?Still trying to decide whether > to go with less expensive CoQ10 or moreexpensive brands, or Idebenone > instead. Vitaline was recommendedsomewhere else, but not sure > why.Thanks,Randall>> Hello everyone, My name is [too!] and I finally got a > partialdx last week. The neuro said I had a mitochondrial disease, but at > thispoint they really don't know which one. More testing will be needed > topin it down. Anyway, it has taken the medical community only 25 yearsto > get this figured out. Though I did read where they only starteddx'ing them > in 1988...Is that true? Not only do I have Mito, I also haveCOPD [mostly > because of an untreated fungal infection]..first time Icomplained about > breathing problems, my GP doc said I was > justoverweight and out of shape... Overweight ya... but at the time, > inreasonably good shape. Needless to say, he had to eat his words. Ilove it > when that happens..yet I would rather he had been right. Andthe same neuro > clinic also discovered that I had Hashimoto's thyroiditislast November, a > lovely little auto-immune disease that causes yourthyroid to cycle from hypo > to hyper until it finally kills your thyroid.Anyway,> they put me on > thyroid meds and waited a few months to see if thethyroid problem was > causing all the symptoms. It wasn't.. but many ofthem did disapear or > improve so they didn't have as many symptons todeal with. But you know what > is so hysterical? The neuro clinic saidthey were going to do a ischemic > muscle test a few months ago, but forsome reason I had to hassle them to set > it up. Something told me Ineeded to have that test done... What is it with > docs that you thepatient have to educate yourself and then tell them how to > do theirjobs? So.. the symtoms > that did not go away with thyroid treatment wasmyoclonus, dystonic spasms, > muscle pain, and muscle weakness. Oh yea...and neuropathy.. all of it > progressive.. Presently I am only takingbaclofen and magnesium malate for > the spasms. They did try a few medsfor the myoclonus without any success, so > I told them the myoclonusdidn't hurt and would they please concentrate on > the spasms thatdid!!!!! Finally, I> got the baclofen. I am to start on > 1200 mgs of Q10 in a few days...they wanted me to get the Vitaline brand... > 200 bucks for a one monthsupply... but if it works it is entirely possible I > could try a slightlyless expensive brand or if they can prove I need it... > get insurance topay for it. I actually managed to get SS Disabilitly before > the mitodx.. not quite sure how since they are so notorius about turning > youdown and trying to wear you down before they finally approve it... but > Igot it. My medicare starts in August..none to soon for me either.... Ikept > hoping that they > would figure out what was wrong and it could beeasily fixed... no such > luck.. so I guess I best be glad I got mydisabiltity. Anyway, along the way > they would suggest a few possibledx's so I would check them out and of > course the best place to get infois from the Internet groups from people > that are already dealing withthe problem... I would end up joining the > groups and then leaving them> once I was assured that was not my problem. > Guess I am finally homenow. But I have to say, Mito never once was > considered by me or thedocs... even these neuros... I think it came as a bit > of shock to all.Family history is sketchy on this because where we think my > mother hasit... the docs probably won't test her because she is now in her > 70'sand they blame every thing on the tubuculer mennigitis she had as a > babyand the resultant damage done. One of her brothers may have had it, > buthe died a few years ago. My grandmother never showed symtoms but mostof > her siblings died relatively young > from heart disease and hergrandmother lived a long and healthy life..she > buried 3 husbands [no Idon't think she was a black widow]. Only her last > outlived her and hewas 20 years her junior. I have 3 sisters and I am pretty > sure one ofthem also has this... she has heart involvement, diabetes and > also hashasimotos and she has been experiencing weakness in her thigh > muscles.> Looking forward to getting to know you and of course picking > yourbrains for all of your Mito knowledge. Cody>> > _______________________________________________> Join Excite! - > http://www.excite.com> The most personalized portal on the > Web!>>> [Non-text portions of this message have been > removed]> Quote Link to comment Share on other sites More sharing options...
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