Guest guest Posted January 20, 2005 Report Share Posted January 20, 2005 Thanks , just wondering. I know that I always have " hyperreflexes " , and have tics frequently (face, arm, leg). My teeth also chatter very easily, with the slightest draft. I think in my case being ill with bronchitis and flu made symptoms that have only been mildly annoying become much worse. Thanks, RH > > Hey Ya'all, > > > > I had another good visit with Dr. S. yesterday. He is now having > me take a DNA test to test for MELAS and MERRF because of my episode > last week. He tested me for Myclonus yesterday and said that I > definitely have it. He gave me a prescription for something but I > don't remember what it is. > > > > Anyway I finally got my wheelchair also Monday night. Dr. S gave > me a script for a scooter and a new cane so I have to start that > paperwork. > > > > He also told me to start reapplying for Disability and he would do > the med paperwork for me so I could get started on Disability. > > > > Anyway, keep me and Dawn in your thoughs and prayers this week > especially because now she doesn't want to leave me by myself at home > and she has to work so she is really upset. > > > > My speech is almost all the way back but I still have a some > problems with some words and my balance is absolutely aweful. I am > going to get Dawn set up on Mitoldies so she can start asking more > questions from some of you that have spouses with this. I just don't > know if she is going to be able to handle the stress from all of > this. > > > > Anyway, I will talk to everyone later. > > > > Thanks, > > > > > > > > > > McCombs > > 2 Cor 1:3-4 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 RH congrats on the postdoc avenue. Interesting that you found yourself in biomedical research. I recently returned to finish my BS in Molecular Biology for the same reason. I figured if no one else knows a whole lot about my disease, I need to have the formal education to back up my BS (ha ha ha). One way or another, I'm using my BS eh ? Best of luck to you ! PS, I here ya on the constipation thing. Morphine makes my bowels stop completely ! If all else fails, there's an enema. I've had to use them before because of GI complications. Fortunately, I only have Morphine during my rare hospitalizations. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Thanks, it's been a rough road, and it's nice to have hope of a job soon after I graduate. I wish I knew more molecular biology, I'm more biochemistry. Here's to good BM's for all (especially the kids, my son has had a lot of problems with constipation, poor thing) Take care, RH > > RH congrats on the postdoc avenue. Interesting that you found > yourself in biomedical research. I recently returned to finish my > BS in Molecular Biology for the same reason. I figured if no one > else knows a whole lot about my disease, I need to have the formal > education to back up my BS (ha ha ha). One way or another, I'm > using my BS eh ? Best of luck to you ! > > PS, I here ya on the constipation thing. Morphine makes my bowels > stop completely ! If all else fails, there's an enema. I've had to > use them before because of GI complications. Fortunately, I only > have Morphine during my rare hospitalizations. > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Thanks, it's been a rough road, and it's nice to have hope of a job soon after I graduate. I wish I knew more molecular biology, I'm more biochemistry. Here's to good BM's for all (especially the kids, my son has had a lot of problems with constipation, poor thing) Take care, RH > > RH congrats on the postdoc avenue. Interesting that you found > yourself in biomedical research. I recently returned to finish my > BS in Molecular Biology for the same reason. I figured if no one > else knows a whole lot about my disease, I need to have the formal > education to back up my BS (ha ha ha). One way or another, I'm > using my BS eh ? Best of luck to you ! > > PS, I here ya on the constipation thing. Morphine makes my bowels > stop completely ! If all else fails, there's an enema. I've had to > use them before because of GI complications. Fortunately, I only > have Morphine during my rare hospitalizations. > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 RH, Good luck on the new positon. I too returned to school after my son's diagnosis. I recieved my Master in Biogenetics.......sounds impressive, hugh? Unfortunetly, I only use it to learn about Mito- never used it in the " work force " LOL! Oh well, it has helped me understand some of the mumbo jumbo! > > RH congrats on the postdoc avenue. Interesting that you found > yourself in biomedical research. I recently returned to finish my > BS in Molecular Biology for the same reason. I figured if no one > else knows a whole lot about my disease, I need to have the formal > education to back up my BS (ha ha ha). One way or another, I'm > using my BS eh ? Best of luck to you ! > > PS, I here ya on the constipation thing. Morphine makes my bowels > stop completely ! If all else fails, there's an enema. I've had to > use them before because of GI complications. Fortunately, I only > have Morphine during my rare hospitalizations. > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I don't have the postdoc position yet, but it looks good. Seems that they are waiting for me to do my defense (in a few weeks), and hopefully they'll still have funding by then and make me an offer. I haven't worked " for real " (=full time, not telecommuting mostly - I telecommute for school now) since 2000, so I have some worries about commuting, but it's only 30 miles away, and right off a major highway. Biogenetics does sound impressive! I wonder if you could get a telecommuting job working on the human genome (maybe the mitochondrial genome?) or something... Take care, RH > > > > RH congrats on the postdoc avenue. Interesting that you found > > yourself in biomedical research. I recently returned to finish my > > BS in Molecular Biology for the same reason. I figured if no one > > else knows a whole lot about my disease, I need to have the formal > > education to back up my BS (ha ha ha). One way or another, I'm > > using my BS eh ? Best of luck to you ! > > > > PS, I here ya on the constipation thing. Morphine makes my bowels > > stop completely ! If all else fails, there's an enema. I've had > to > > use them before because of GI complications. Fortunately, I only > > have Morphine during my rare hospitalizations. > > > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 RH, I will keep thinking positive thoughts for your job. As far as my " Career " right now I am Senior Consultant with Kay and I am able to book appts around my health and the boys needs. It is good money for the small amount of time I actually invest and since I have a website I can do almost all my work from home for reorders. I also have clients book online webparties where they have friends visit my website and order during specific times. The web hostess get a % of the total sales during her webparty-----again not too much time needed-----just filling the orders ! I never even have to leave my house. Never know tho maybe someday I will be back among the " adults in the real world " :-) > > > > > > RH congrats on the postdoc avenue. Interesting that you found > > > yourself in biomedical research. I recently returned to finish > my > > > BS in Molecular Biology for the same reason. I figured if no one > > > else knows a whole lot about my disease, I need to have the > formal > > > education to back up my BS (ha ha ha). One way or another, I'm > > > using my BS eh ? Best of luck to you ! > > > > > > PS, I here ya on the constipation thing. Morphine makes my > bowels > > > stop completely ! If all else fails, there's an enema. I've had > > to > > > use them before because of GI complications. Fortunately, I only > > > have Morphine during my rare hospitalizations. > > > > > > bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Thanks for this RH. I needed this information, as travel is a real nightmare for me and I was considering testing far away. God bless, Hazelpone Re: Kent >I decided two years ago to go to Atlanta for my fresh muscle biopsy, > although I'm only 50 miles away from NYC. > > My only knowledge of whether they do fresh biopsies at C-P is from 2 > years ago, when a lab tech there said " the sample is flash frozen, > there is no need to test fresh muscle " . Things may have changed > though, or maybe they are so far beyond the other groups doing the > testing that they can use frozen muscle. > > My experience in Atlanta was VERY positive, which was important to me > and my family, as I dragged them all there and was pregnant at the > time. Angel Flights was available, as was the local Mac > House if we couldn't afford a hotel. The area (northeast side of > Atlanta I think?) has several hospitals, and the hotels are used to > housing people who are recuperating. > > The scheduling for the testing in Atlanta was pretty quick, available > within a month, but I had to delay the testing a few months for > insurance and scheduling travel. The downside was that I still don't > have genetic testing results, but the mito disease results were > received at eight weeks on the dot. > > Take care, > RH > > > >> > thanks Laurie, Barbara and Hazel for your info and encouragement. >> > so it seems i need to talk to the doc doing the biopsy about > enzyme >> > assays on a fresh sample as well as COX, SDH and gamouri staining. >> > does that sound right? is there a good pathologist here in > illinois? >> > kent > > > > > > 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 1, 2005 Report Share Posted June 1, 2005 Thanks for this RH. I needed this information, as travel is a real nightmare for me and I was considering testing far away. God bless, Hazelpone Re: Kent >I decided two years ago to go to Atlanta for my fresh muscle biopsy, > although I'm only 50 miles away from NYC. > > My only knowledge of whether they do fresh biopsies at C-P is from 2 > years ago, when a lab tech there said " the sample is flash frozen, > there is no need to test fresh muscle " . Things may have changed > though, or maybe they are so far beyond the other groups doing the > testing that they can use frozen muscle. > > My experience in Atlanta was VERY positive, which was important to me > and my family, as I dragged them all there and was pregnant at the > time. Angel Flights was available, as was the local Mac > House if we couldn't afford a hotel. The area (northeast side of > Atlanta I think?) has several hospitals, and the hotels are used to > housing people who are recuperating. > > The scheduling for the testing in Atlanta was pretty quick, available > within a month, but I had to delay the testing a few months for > insurance and scheduling travel. The downside was that I still don't > have genetic testing results, but the mito disease results were > received at eight weeks on the dot. > > Take care, > RH > > > >> > thanks Laurie, Barbara and Hazel for your info and encouragement. >> > so it seems i need to talk to the doc doing the biopsy about > enzyme >> > assays on a fresh sample as well as COX, SDH and gamouri staining. >> > does that sound right? is there a good pathologist here in > illinois? >> > kent > > > > > > 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 1, 2005 Report Share Posted June 1, 2005 It won't hurt to call the different places and see if they would give you some basic info (travel and accommodation issues, as well as scheduling and insurance) without actually scheduling an appointment. For example, Cleveland Clinic may be " backed up " , but I wonder if that means a 6 month wait, or a 2 year wait (or more or less)? To me, it is at least empowering to find out more info, even if you don't end up using the information. That is, unless you are in " information overload " phase, and need a break from medical terms for a while! Take care, RH > >> > thanks Laurie, Barbara and Hazel for your info and encouragement. > >> > so it seems i need to talk to the doc doing the biopsy about > > enzyme > >> > assays on a fresh sample as well as COX, SDH and gamouri staining. > >> > does that sound right? is there a good pathologist here in > > illinois? > >> > kent > > > > > > > > > > > > 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 1, 2005 Report Share Posted June 1, 2005 It won't hurt to call the different places and see if they would give you some basic info (travel and accommodation issues, as well as scheduling and insurance) without actually scheduling an appointment. For example, Cleveland Clinic may be " backed up " , but I wonder if that means a 6 month wait, or a 2 year wait (or more or less)? To me, it is at least empowering to find out more info, even if you don't end up using the information. That is, unless you are in " information overload " phase, and need a break from medical terms for a while! Take care, RH > >> > thanks Laurie, Barbara and Hazel for your info and encouragement. > >> > so it seems i need to talk to the doc doing the biopsy about > > enzyme > >> > assays on a fresh sample as well as COX, SDH and gamouri staining. > >> > does that sound right? is there a good pathologist here in > > illinois? > >> > kent > > > > > > > > > > > > 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 1, 2005 Report Share Posted June 1, 2005 Exactly what I plan to do. Thanks again. God bless, Hazelpone ----- Original Message ----- > It won't hurt to call the different places and see if they would give > you some basic info (travel and accommodation issues, as well as > scheduling and insurance) without actually scheduling an > appointment. For example, Cleveland Clinic may be " backed up " , but I > wonder if that means a 6 month wait, or a 2 year wait (or more or > less)? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Exactly what I plan to do. Thanks again. God bless, Hazelpone ----- Original Message ----- > It won't hurt to call the different places and see if they would give > you some basic info (travel and accommodation issues, as well as > scheduling and insurance) without actually scheduling an > appointment. For example, Cleveland Clinic may be " backed up " , but I > wonder if that means a 6 month wait, or a 2 year wait (or more or > less)? > Quote Link to comment Share on other sites More sharing options...
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