Guest guest Posted March 28, 2005 Report Share Posted March 28, 2005 I am sorry to hear about and your loss. I personally have not lost any of my children to this horrible disease but have two fighting it. There are many here that have lost children however and can answer any questions you may have. I just wanted to say welcome to the group and let you know how sorry I am for your loss. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see a photo look into what Mito looks like Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, asthma, cyclic vomiting, bladder issues, wheelchair for distances, eye issues, autistic behaviors, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning dys., SID, GERD, dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive phlegm, asthma, trach issues, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Hi Laurie, Have you recently had your electrolyte and mineral panels checked, ie potassium, calcium, magnesium? I have similar problems when my calcium or magnesium gets too low. The girls have similar problems when their potassium is too low. Laurie Fitzgerald laurie.fitzgerald@...> wrote: Hi all I get times (usually many hours) when I have cramping everywhere in my body - painful charley horse type cramps. I can finally get them to go away, only to return if I move any part of my body. I cannot figure out what might be triggering them. Any ideas? Do any of you have the same thing happen and have you figured it out? laurie 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 December 5, 2005 Report Share Posted December 5, 2005 Joanne I should have mentioned that I have had my electrolyes checked each time. My magnesium is at the very low of normal, but that is as high as we can get it and it has been remaining there. This was the cause in the past for cramps in various parts of the body, but not all over. I supplement with calcium, magnesium and potassiurm because of proximal renal tubular dysfunction. Thanks for the input. laurie > Hi Laurie, > > Have you recently had your electrolyte and mineral panels checked, ie > potassium, calcium, magnesium? I have similar problems when my calcium or > magnesium gets too low. The girls have similar problems when their > potassium is too low. > > > > > Laurie Fitzgerald laurie.fitzgerald@...> wrote: > Hi all > > I get times (usually many hours) when I have cramping everywhere in my > body - painful charley horse type cramps. I can finally get them to go > away, only to return if I move any part of my body. I cannot figure > out what might be triggering them. Any ideas? Do any of you have the > same thing happen and have you figured it out? > > laurie > > > 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 December 5, 2005 Report Share Posted December 5, 2005 One other thing you could try, but cautiously, woudl be drinking some water with quinine. It is sold over the counter and usign to be the first thing physicians recommended for muscle cramps (plus it's a lot cheaper than a prescription for the drug Quinine). Laurie Fitzgerald laurie.fitzgerald@...> wrote: Joanne I should have mentioned that I have had my electrolyes checked each time. My magnesium is at the very low of normal, but that is as high as we can get it and it has been remaining there. This was the cause in the past for cramps in various parts of the body, but not all over. I supplement with calcium, magnesium and potassiurm because of proximal renal tubular dysfunction. Thanks for the input. laurie > Hi Laurie, > > Have you recently had your electrolyte and mineral panels checked, ie > potassium, calcium, magnesium? I have similar problems when my calcium or > magnesium gets too low. The girls have similar problems when their > potassium is too low. > > > > > Laurie Fitzgerald laurie.fitzgerald@...> wrote: > Hi all > > I get times (usually many hours) when I have cramping everywhere in my > body - painful charley horse type cramps. I can finally get them to go > away, only to return if I move any part of my body. I cannot figure > out what might be triggering them. Any ideas? Do any of you have the > same thing happen and have you figured it out? > > laurie > > > 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 December 5, 2005 Report Share Posted December 5, 2005 Laurie, A friend who does not have mito had intense cramping. He was even afraid to drive because his hands or legs could cramp up so intensely without warning. He began taking magnesium. He took as much as he could until he got diarrhea and then cut back to the point where he was on the highest point possible without diarrhea. It worked for him completely. Just one person's experience, don't know if it's relevant to you. (Also, I can't remember if it was you or someone else who recently mentioned taking high doses of magnesium already). Good luck, Shayna > > Hi all > > I get times (usually many hours) when I have cramping everywhere in my > body - painful charley horse type cramps. I can finally get them to go > away, only to return if I move any part of my body. I cannot figure > out what might be triggering them. Any ideas? Do any of you have the > same thing happen and have you figured it out? > > laurie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 ---Good suggestion. I finally figured out it was low calcium that causes me to have painful cramping all over my body especially my legs and torso. I have my electrolyes checked frequently, but it always seems to be when I am doing well. I decided to go to the ER when I feel my electroyes off. I hope you find an answer soon. Dawn A In , Joanne Kocourek wrote: > > Hi Laurie, > > Have you recently had your electrolyte and mineral panels checked, ie potassium, calcium, magnesium? I have similar problems when my calcium or magnesium gets too low. The girls have similar problems when their potassium is too low. > > > > Laurie Fitzgerald wrote: > Hi all > > I get times (usually many hours) when I have cramping everywhere in my > body - painful charley horse type cramps. I can finally get them to go > away, only to return if I move any part of my body. I cannot figure > out what might be triggering them. Any ideas? Do any of you have the > same thing happen and have you figured it out? > > laurie > > > 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 December 5, 2005 Report Share Posted December 5, 2005 Dawn and Joanne Thanks for the suggestions. I have Quinine to take for cramping, but that doesn't even work when it is this bad. Thankfully it is only happening about once every couple of weeks, although can last for more than one day. laurie > ---Good suggestion. I finally figured out it was low calcium that > causes me to have painful cramping all over my body especially my > legs and torso. I have my electrolyes checked frequently, but it > always seems to be when I am doing well. I decided to go to the ER > when I feel my electroyes off. I hope you find an answer soon. Dawn A > > > > > In , Joanne Kocourek > wrote: > > > > Hi Laurie, > > > > Have you recently had your electrolyte and mineral panels > checked, ie potassium, calcium, magnesium? I have similar problems > when my calcium or magnesium gets too low. The girls have similar > problems when their potassium is too low. > > > > > > > > Laurie Fitzgerald wrote: > > Hi all > > > > I get times (usually many hours) when I have cramping everywhere > in my > > body - painful charley horse type cramps. I can finally get them > to go > > away, only to return if I move any part of my body. I cannot figure > > out what might be triggering them. Any ideas? Do any of you have > the > > same thing happen and have you figured it out? > > > > laurie > > > > > > 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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