Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 I haven't been here for a while but once again need to turn to you all for some help. First, thank you for the information about getting insurance to help with the Q10. It didn't work, but at least I gave it a try. What I need now, sadly, is information to help me figure out what or where or what stage he is in now. He seems to have been getting so much worse these past months. Doctor has him on 1200m of Q10 with no change we can see and he continues to get weaker. Sleeps 12+ hours at night and several more during the day. Some days he is unable to not sleep. Can still walk, but barely. Has anyone improved that has gotten this bad? His heart and lungs are good and other than the overwhelming weakness as far as we know, no life threating organs or conditions exisits. He is blind and deaf, and with the dibilitating weakness, he thinks he is approaching a final stage of the condition and is almost giving up, so any suggestions would be appreciated. His doctor is good, but it appears to me that as an adult MM patient, the doctor is not all that involved in his treatment as much as simply monitoring his condition. Other than this group, there is no where to get help or prognosis information, so thank you for being here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 Is your husband taking prescription Carnitor? I'm sorry to read about the decline. This is not a nice medical condition to be dealing with and it treats some different than others. I can't remember where you live but if it's at all possible, it might be a good idea to see one of the specialist. At the very least, join us for the Mito chat on 7/12 and ask Dr Gropman. She's excellent and I'm very sure she will try to help you. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2004 Report Share Posted June 25, 2004 I am sorry to hear of your husbands decline. My mother lived for some time after she was no longer able to walk and everything was an effort. We are all so different that we really can't predict how long any of us have, mito or not. I hear your frustration and wish there was something I could say or do to help. Please come here to vent or ask for positive thoughts. We will always be here for you. laurie > > Reply-To: > Date: Fri, 25 Jun 2004 19:34:58 -0000 > To: > Subject: Husband update > > I haven't been here for a while but once again need to turn to you > all for some help. First, thank you for the information about > getting insurance to help with the Q10. It didn't work, but at least > I gave it a try. > > What I need now, sadly, is information to help me figure out what or > where or what stage he is in now. He seems to have been getting so > much worse these past months. Doctor has him on 1200m of Q10 with no > change we can see and he continues to get weaker. Sleeps 12+ hours > at night and several more during the day. Some days he is unable to > not sleep. Can still walk, but barely. Has anyone improved that has > gotten this bad? His heart and lungs are good and other than the > overwhelming weakness as far as we know, no life threating organs or > conditions exisits. He is blind and deaf, and with the dibilitating > weakness, he thinks he is approaching a final stage of the condition > and is almost giving up, so any suggestions would be appreciated. > > His doctor is good, but it appears to me that as an adult MM patient, > the doctor is not all that involved in his treatment as much as > simply monitoring his condition. Other than this group, there is no > where to get help or prognosis information, so thank you for being > here. > > > > 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 June 26, 2004 Report Share Posted June 26, 2004 I can make a suggestion, I don't know if it will help BUT... I would recommend taking the Vitaline COQ10... I was taking it for a year at 600mg & I had seen changes in most area's, I then went to 1200mg & saw more positive changes... Then, about two months ago, my doctor switched me to a compounded version so the insurance would cover it... Unfortunately for the next four weeks I got worse & worse, all my systems are involved, but at the end of the fourth week, I could barely get out of my bed due to the fatigue... then it hit me, that all of this had happened after I switched to the compounded CoQ10... I went back to the Vitaline 1200mg & for the last four weeks have been slowly improving & now I am back to my normal (which still does involve most all of my organ's except heart) My doctor called the pharmacist who did the compounding & they made some call's & it does turn out, that the vitaline has a different molecular formula... I sort of hesitated to make my situation known, because what works for me, might or might not work for others, KWIM? But, it's worth a shot & yes, I was scary sick by the end of the four weeks & I have rebounded nicely IMHO... I really do hope this helps... Chris In a message dated 6/26/2004 3:41:24 AM Eastern Daylight Time, writes: What I need now, sadly, is information to help me figure out what or where or what stage he is in now. He seems to have been getting so much worse these past months. Doctor has him on 1200m of Q10 with no change we can see and he continues to get weaker. Sleeps 12+ hours at night and several more during the day. Some days he is unable to not sleep. Can still walk, but barely. Has anyone improved that has gotten this bad? His heart and lungs are good and other than the overwhelming weakness as far as we know, no life threating organs or conditions exisits. He is blind and deaf, and with the dibilitating weakness, he thinks he is approaching a final stage of the condition and is almost giving up, so any suggestions would be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 I am so sorry to hear that your husband is going through so much ... I don't really have an information to offer you but I wanted to let you know that I will keep you both in my thoughts ... ~ Gwenni ~ Husband update I haven't been here for a while but once again need to turn to you all for some help. First, thank you for the information about getting insurance to help with the Q10. It didn't work, but at least I gave it a try. What I need now, sadly, is information to help me figure out what or where or what stage he is in now. He seems to have been getting so much worse these past months. Doctor has him on 1200m of Q10 with no change we can see and he continues to get weaker. Sleeps 12+ hours at night and several more during the day. Some days he is unable to not sleep. Can still walk, but barely. Has anyone improved that has gotten this bad? His heart and lungs are good and other than the overwhelming weakness as far as we know, no life threating organs or conditions exisits. He is blind and deaf, and with the dibilitating weakness, he thinks he is approaching a final stage of the condition and is almost giving up, so any suggestions would be appreciated. His doctor is good, but it appears to me that as an adult MM patient, the doctor is not all that involved in his treatment as much as simply monitoring his condition. Other than this group, there is no where to get help or prognosis information, so thank you for being here. 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 June 26, 2004 Report Share Posted June 26, 2004 Where do I go for the chat with Dr. Gropman? Is it on the eGroup website? And what time is the chat going to be at on that day? Thanks in advance for answering my questions ~ Gwenni ~ Re: Husband update Is your husband taking prescription Carnitor? I'm sorry to read about the decline. This is not a nice medical condition to be dealing with and it treats some different than others. I can't remember where you live but if it's at all possible, it might be a good idea to see one of the specialist. At the very least, join us for the Mito chat on 7/12 and ask Dr Gropman. She's excellent and I'm very sure she will try to help you. Alice 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 June 26, 2004 Report Share Posted June 26, 2004 Gwenni The chat is at and go to the chat area. It is at 9:00 Eastern Daylight Savings Time and lasts for one hour. You have to register a name and password to get in. This is free and should be done before that date. We have a guest (usually a doctor) once a month. They are on Monday nights. Once fall comes, we will have weekly chats again with a special guest once a month. The moderators are taking some time off this summer, so we will only have our guest chats. There is a calender at the site. laurie > > Reply-To: > Date: Sat, 26 Jun 2004 03:34:40 -0500 > To: > > Subject: Re: Husband update > > Where do I go for the chat with Dr. Gropman? Is it on the eGroup website? And > what time is the chat going to be at on that day? > > Thanks in advance for answering my questions > > ~ Gwenni ~ > Re: Husband update > > > > Is your husband taking prescription Carnitor? I'm sorry to read about the > decline. This is not a nice medical condition to be dealing with and it > treats some different than others. I can't remember where you live but if > it's at all possible, it might be a good idea to see one of the specialist. > At the very least, join us for the Mito chat on 7/12 and ask Dr Gropman. > She's excellent and I'm very sure she will try to help you. > > Alice > > > 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 June 26, 2004 Report Share Posted June 26, 2004 Thanks for the info I will be sure to sign up so I can be at the chat too ... Brightest Blessings ... ~ Gwenni ~ Re: Husband update Gwenni The chat is at and go to the chat area. It is at 9:00 Eastern Daylight Savings Time and lasts for one hour. You have to register a name and password to get in. This is free and should be done before that date. We have a guest (usually a doctor) once a month. They are on Monday nights. Once fall comes, we will have weekly chats again with a special guest once a month. The moderators are taking some time off this summer, so we will only have our guest chats. There is a calender at the site. laurie Quote Link to comment Share on other sites More sharing options...
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