Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Betsy, What can you tell me about MNGIE? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 So what do they do to treat these motility problems if one cannot take the prokinetic drugs (reglan, domperidone, zelnorm)?? Does using the Mito cocktail help any of the motility symptoms? Do some people with the MNGIE symptoms have to resort to tube feedings? Still looking for answers, -Joy (Gastroparesis/other motility issues; Crohn's or Eosinophilic Gastroenteritis or Mito or ??? <---doctors aren't sure; it's flaring now though and I might be getting a feeding tube so I can stop losing weight; severe Environmental Allergies; lots of other issues) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 I may have to go on TPN which Dr. Cohen said could maybe help with the motility as it would give me more muscle tone. I won't know about that until after all the tests are complete. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Joy I had terrible motility problems and was given every kind of stool softener available without any change. For me, the answer was getting enough CoQ10, along with the Carnitor. I have had no problems since getting to the appropriate level. I do take Prevacid for GERD. laurie > > Reply-To: > Date: Tue, 24 Feb 2004 01:25:23 -0000 > To: > Subject: Re: MNGIE > > So what do they do to treat these motility problems if one cannot > take the prokinetic drugs (reglan, domperidone, zelnorm)?? Does > using the Mito cocktail help any of the motility symptoms? Do some > people with the MNGIE symptoms have to resort to tube feedings? > > Still looking for answers, > > -Joy (Gastroparesis/other motility issues; Crohn's or Eosinophilic > Gastroenteritis or Mito or ??? <---doctors aren't sure; it's flaring > now though and I might be getting a feeding tube so I can stop > losing weight; severe Environmental Allergies; lots of other issues) > > > > > 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 February 24, 2004 Report Share Posted February 24, 2004 Betsy- I will be 20 on Sunday. Thanks for sharing your symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Betsy, I'm having the MNGIE test, creatine test, anorectal manometry, barium enema, colonic transit test, defography and TSH blood test. I will also have my trace mineral's measured as well. I have a broviac central line that I recieve my carnitine through so I would recieve the TPN the same way. I have researched the gastric pacemaker but it's just for the stomach and generally they won't use them in people who have motility probs. throughout their GI tracts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 -Dear , Have you tried propulsid or domperidone for your gut? They both help mine tremendously (had to go off the propuslid for heart arythmias though, so the same may be true for you) The Mestinon I take to help my muscles also helps my gut, as does the anitdepressant prozac. Could any of these help you, Celia -- In , LILQT4U1984@a... wrote: > Thanks Betsy. I couldn't tolerate either one of the meds. you mentioned > taking. I had severe and almost unheard of reactions to both. I'm really glad > that they are working for you and at least helping some of your symptoms. I > also fill up very fast and even taking one bite of something that make me feel > like I have eaten a meal. I get hungry but have to eat so quickly or I can't > hold much. I feel so bloated and full most of the time. My lower left side > distends alot too. What other symptoms do you have besides GI? > I live in KY. U? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 10-15 mg of CoQ10 per kilo of body weight is recommended by Dr. Cohen. Betsy Stroup wrote: Laurie, How do you know do get the appropriate level of CoQ10. Is there a body weight comparison? Betsy ----- Original Message ----- From: Laureta Fitzgerald To: Sent: Tuesday, February 24, 2004 5:12 AM Subject: Re: MNGIE Joy I had terrible motility problems and was given every kind of stool softener available without any change. For me, the answer was getting enough CoQ10, along with the Carnitor. I have had no problems since getting to the appropriate level. I do take Prevacid for GERD. laurie > > Reply-To: > Date: Tue, 24 Feb 2004 01:25:23 -0000 > To: > Subject: Re: MNGIE > > So what do they do to treat these motility problems if one cannot > take the prokinetic drugs (reglan, domperidone, zelnorm)?? Does > using the Mito cocktail help any of the motility symptoms? Do some > people with the MNGIE symptoms have to resort to tube feedings? > > Still looking for answers, > > -Joy (Gastroparesis/other motility issues; Crohn's or Eosinophilic > Gastroenteritis or Mito or ??? <---doctors aren't sure; it's flaring > now though and I might be getting a feeding tube so I can stop > losing weight; severe Environmental Allergies; lots of other issues) > > > > > 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 February 24, 2004 Report Share Posted February 24, 2004 Celia, Thanks for your thoughts. I asked the gastro about Propulsid and he said he won't let any of patients take it. For one because it doesn't work on the colon, and two because he doesn't have a great lawyer. Ha! I tried Domperidone with no success. I've not heard of Mestonin. I'll read up on that. Thanks again, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 -Dear Alison, Just a quick question... how would the TPN help your muscle tone? I know with mito it's important to push fluids (a little hard with the motility issues, but I just basicly sip all day), so is it related to that or does it do something at the muscular level. By the way, they are considering me for MINGIE too, Celia -- In , LILQT4U1984@a... wrote: > I may have to go on TPN which Dr. Cohen said could maybe help with the > motility as it would give me more muscle tone. I won't know about that until after > all the tests are complete. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 , Thanks for the advice on raising my CoQ to help with the crash. I just did my calculation and see I am way low on the dosage, Celia > > > Laurie, > > How do you know do get the appropriate level of CoQ10. Is there a body > > weight comparison? > > Betsy > > > > Re: MNGIE > > > > > > So what do they do to treat these motility problems if one cannot > > > take the prokinetic drugs (reglan, domperidone, zelnorm)?? Does > > > using the Mito cocktail help any of the motility symptoms? Do some > > > people with the MNGIE symptoms have to resort to tube feedings? > > > > > > Still looking for answers, > > > > > > -Joy (Gastroparesis/other motility issues; Crohn's or Eosinophilic > > > Gastroenteritis or Mito or ??? <---doctors aren't sure; it's flaring > > > now though and I might be getting a feeding tube so I can stop > > > losing weight; severe Environmental Allergies; lots of other issues) > > > > > > > > > > > > > > > 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 February 24, 2004 Report Share Posted February 24, 2004 Celia, Dr. Cohen thinks that since I'm wasting so much muscle away that by putting me on TPN it would help me to gain weight which in turn would build up some muscle mass too. He is hypothesising that my gastro tract has lost muscle tone from weight loss and that is contributing to the slow motility as there is not adequate muscle tone to push things through. Hope that makes sense. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 ALLISON, FIRST OF ALL, IT STANDS FOR MITOCHONDRIAL NEUROLOGICAL GASTROINTESTINAL ENCEPHALOPATHY. IT BASICALLY MEANS THAT THE COLON AND STOMACH MUSCLES BEGAN TO SLOW DOWN AND IT TAKES MORE STIMULATION FOR THE COLON TO MOVE THINGS THROUGH. THUS THE ZELNORM AND WATER. AS FAR AS THE STOMACH GOES, I CAN EAT ONE GOOD MEAL A DAY AND NOT GET HUNGRY FOR SEVERAL HOURS. FOR EXAMPLE, ON THANKSGIVING DAY I ATE A DESCENT SIZE MEAL AT 2PM. I DID NOT GET HUNGRY UNTIL AFTER MIDNIGHT THAT NIGHT. MY MEALS HAVE HAD TO BECOME LESS IN SIZE AND MORE FREQUENT. MY STOMACH FEELS UP VERY FAST ESPECIALY WITH FOODS THAT TAKE LONGER TO DIGEST, LIKE BREAD, PASTA, STARCHES, ETC. i TAKE ZELNORM 6 MG ONE TABLET TWO TIMES A DAY AND MY REGLAN IS 5 MG AT BEDTIME. I WAS SUPPOSED TO TAKE THE REGLAN TWICE A DAY BUT THE PILL IN THE AM MADE ME SO NERVOUS I WAS CLIMBING THE WALL. GOOD LUCK AND YOU CAN WRITE ME ANYTIME YOU WANT. I AM JUST GETTING STARTED IN THE GROUP AND DON'T KNOW ANYBODY YET. BY THE WAY, WHERE DO YOU LIVE? BETSY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Betsy The recommended amount is 10 mg per kilo of body weight, but I take much more. MDA and others are doing research and are finding that 1200 mg. seems to be what is needed for other diseases like Parkinson's laurie > > Reply-To: > Date: Wed, 25 Feb 2004 10:45:19 -0600 > To: < > > Subject: Re: MNGIE > > Laurie, > How do you know do get the appropriate level of CoQ10. Is there a body weight > comparison? > Betsy > Re: MNGIE >> >> So what do they do to treat these motility problems if one cannot >> take the prokinetic drugs (reglan, domperidone, zelnorm)?? Does >> using the Mito cocktail help any of the motility symptoms? Do some >> people with the MNGIE symptoms have to resort to tube feedings? >> >> Still looking for answers, >> >> -Joy (Gastroparesis/other motility issues; Crohn's or Eosinophilic >> Gastroenteritis or Mito or ??? <---doctors aren't sure; it's flaring >> now though and I might be getting a feeding tube so I can stop >> losing weight; severe Environmental Allergies; lots of other issues) >> >> >> >> >> 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 February 24, 2004 Report Share Posted February 24, 2004 Happy Birthday a few days early. laurie > From: LILQT4U1984@... > Reply-To: > Date: Tue, 24 Feb 2004 15:36:10 EST > To: > Subject: Re: MNGIE > > Betsy- > I will be 20 on Sunday. Thanks for sharing your symptoms. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 From me too, as I am afraid this "mito fog" brain might forget otherwise. I hope it is a GREAT ONE!! Laureta Fitzgerald wrote: Happy Birthday a few days early. laurie From: LILQT4U1984@... Reply-To: Date: Tue, 24 Feb 2004 15:36:10 EST To: Subject: Re: MNGIE Betsy- I will be 20 on Sunday. Thanks for sharing your symptoms. 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 February 24, 2004 Report Share Posted February 24, 2004 Ditto from me too as I will be in Cleveland and most likely not online for several days. Happy Birthday, . Alice Re: MNGIE Betsy- I will be 20 on Sunday. Thanks for sharing your symptoms. 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 February 24, 2004 Report Share Posted February 24, 2004 Getting the right level of carnitor and coQ10 also helped my 11 year old son. He weighs 100 lbs though and is short and stocky. He was seen by all kinds of specialists before I took him to Dr Tick and we decided to have him tested for melas. I should have thought of it sooner. He now takes 90 mg of carniqgel every day. That is equivelant to bout 270 mg of regular coQ10 and also 750 mg of carnitor in one capsule. For him this is easier than qgel and carnitor separate. I take the two separate because I have loads of carnitor from the insurance paying for it. Anyway, since being on this he rarely has stomach problems anymore. When he does it is when he is at his friends for the weekend and does not take the pills. Before that almost everyday he was complaining he had a stomach or sideache. Several times he ended up in the hospital and xrays showed he was very plugged up. He even started vomiting a couple of times. Nothing they gave him seemed to really work, most of the time it just gave him cramps. Changing his diet never really worked either. But, the carniqgel really works. Janet Sample Re: MNGIE > > > > So what do they do to treat these motility problems if one cannot > > take the prokinetic drugs (reglan, domperidone, zelnorm)?? Does > > using the Mito cocktail help any of the motility symptoms? Do some > > people with the MNGIE symptoms have to resort to tube feedings? > > > > Still looking for answers, > > > > -Joy (Gastroparesis/other motility issues; Crohn's or Eosinophilic > > Gastroenteritis or Mito or ??? <---doctors aren't sure; it's flaring > > now though and I might be getting a feeding tube so I can stop > > losing weight; severe Environmental Allergies; lots of other issues) > > > > > > > > > > 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 February 24, 2004 Report Share Posted February 24, 2004 --- Also, I think you would absorb more nutrients with TPN??? That would help build muscle back up and hopefully make you feel a lot better. Happy Birthday from me too. I will forget on Sunday. Dawn In , LILQT4U1984@a... wrote: > Celia, > Dr. Cohen thinks that since I'm wasting so much muscle away that by putting > me on TPN it would help me to gain weight which in turn would build up some > muscle mass too. He is hypothesising that my gastro tract has lost muscle tone > from weight loss and that is contributing to the slow motility as there is > not adequate muscle tone to push things through. Hope that makes sense. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Thanks Laurie! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Thank you so much Alice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 lol Thank YOU ! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Thank you Dawn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 , I live in Tennessee. I also have PSVT(paroxysmal supraventricular tachycardia), extreme fatigue, sore feet and muscles, some problems with my grip n my hands , periodically.I also believe you are very young. I am 39. Betsy Re: MNGIE Thanks Betsy. I couldn't tolerate either one of the meds. you mentioned taking. I had severe and almost unheard of reactions to both. I'm really glad that they are working for you and at least helping some of your symptoms. I also fill up very fast and even taking one bite of something that make me feel like I have eaten a meal. I get hungry but have to eat so quickly or I can't hold much. I feel so bloated and full most of the time. My lower left side distends alot too. What other symptoms do you have besides GI? I live in KY. U? 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 February 25, 2004 Report Share Posted February 25, 2004 Laurie, How do you know do get the appropriate level of CoQ10. Is there a body weight comparison? Betsy Re: MNGIE> > So what do they do to treat these motility problems if one cannot> take the prokinetic drugs (reglan, domperidone, zelnorm)?? Does> using the Mito cocktail help any of the motility symptoms? Do some> people with the MNGIE symptoms have to resort to tube feedings?> > Still looking for answers,> > -Joy (Gastroparesis/other motility issues; Crohn's or Eosinophilic> Gastroenteritis or Mito or ??? <---doctors aren't sure; it's flaring> now though and I might be getting a feeding tube so I can stop> losing weight; severe Environmental Allergies; lots of other issues)> > > > > 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...
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