Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Welcome , Your story sounds very familiar. You will find a knowledgeable group of people here. If one person doesn't know an answer, another one generally does. It is nice to know there others to share your struggles with. Glad to have you join. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 , Hi and welcome to the group. I am sorry you have to be here, but I think you will find a very supportive and knowledgeable bunch of people here. I am 27 and also started having symptoms in high school. I was diagnosed in 1995 after a muscle biopsy. I, along with many others here have endurance issues. I know many have made adaptations on how they do different things like dishes, I need to sit down to do any type of housework to conserve energy. I use a walker for balance and I also use a wheelchair when I am out and about due to my lack of endurance and balance issues. I hope that you find out some answers from your biopsy. This group also has a great wealth of information. Smiles, a n Sat, 7 Aug 2004 07:03:45 -0600 " A ADAMS " justagram14@...> writes: Hello to all. My name is McCombs, I am 29 years old. I am married to my awesome wife Dawn. I have a 6 year old step son and a 2 year old son. I am a community outreach missionary with Freedom Baptist Temple here in Xenia. My wife works at the local hospital and also substitutes school during the school year at my oldest son's Christian School. I started having problems about 10 or 12 years ago when I was in High School. I would get mild to moderate cramping in my hands and feet when I would work out. Occasionally over the next few years after that I noticed that I had a sugar intolerance..ie. I fell asleep a lot after eating a lot of sugar. I told my family doctor about it and he said that I was borderline hypoglycemic and had a mild potassium deficiency. I never thought much about it. About five years ago the cramping got worse and I started having trouble with doing strenuous activity. I was a part time firefighter and I tended to dehydrate very rapidly due to extreme sweating and I would collapse a lot. It started to affect normal activities soon after that. In the past two years I have a lot of slurred to mumbling speech, can't walk more than twenty or thirty feet sometimes and get winded, and I get cramps so bad that I will just ball up and cry. I also started stumbling a lot. Legs buckling, falling back down when I stand up. A year and a half ago I finally went to Physical Medicine and Rehab doctor, and immediately began rigorous testing. He at first suspected possibly MS but my EMG's and MRI and blood test were coming back relatively normal. For six months I was treated by him and finally he gave up trying to figure it out and sent me to a Neurologist. I went to OSU hospital in Columbus. The neurologist there decided that it was something in my muscles. Muscular Dystrophy was ruled out. My Aunt Jannette in Texas talked to me and said she was running through the same symptoms and problems, except she was having seizures. She had been back and forth with her Neurologists on getting a diagnosis. She told me of my cousin Joni's son having a mito cytopathy disorder. I called Joni immediately and she told me everything that was happening with her son. Joni's mom, Donna had passed away 6 months before from complications of ALS (Lou Gehrig's Disease). We talked about it possibly being something genetic. My insurance won't cover a genetic test. But through looking through all the medical issues with my Aunts Donna and Janette, and my cousin Joni's son, my Doctor is now strongly leaning towards a Mito Disorder in me also. I am finally being sent for a muscle biopsy in the next few weeks. I just pray that it will yield something so that I can begin the right treatments. The hardest thing for me is I have no endurance with anything. Normal activities like folding the laundry and doing the dishes can bring painful cramps so bad that I have to sit down for 15 minutes or so. I can't even help teach my 6 year old how to ride his bike. I leave it all in God's hands. It is even more heart breaking to see so many young children with their lives cut short because of this problem. I also pray that there is a cure found sometime soon. I want to thank you for allowing me to join . I need a strong support group of friends that are facing the same thing that I am. My friends and family just don't understand because they look at my age and see how I was a few years ago and they just wonder what happened. Thank you, McCombs Xenia, Ohio 2 Corinthians 1:3-4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Hello , Welcome to a wonderful caring and Smart group of folks....just about anything you are facing, someone here has been through it. I'm Lynda, the caretaker for Dewayne(DW), my best friend and husband. We live in Southeastern KY and also went to OSU in Columbus. We saw Dr. Kissel who sent us to Dallas TX for testing. DW's case sounds soooo familiar. Horrible cramps growing up....doc says growing pains......always feeling rough and out of shape during basketball season, but basically ok. Then at age 38 after a day of heavy work (logging), the horrible " roll you up in a ball " cramps started. He was diagnosed with Rhabdomyolosis. This happened several times after hard days in the field....(we farm on top of our real jobs:) Finally someone insisted we find the cause of the rhabdo episodes....That led from Univ. of KY to OSU to TX. DW has been going downhill since. Horrible chronic pain, bladder trouble, swallowing & choking issues, memory loss, confusion and most recently breathing difficulties are the main issues. Enough about us....we know several folks here that live around Xenia.....seems half of KY went to Ohio to work years ago. You have found a great group of folks here. There is always someone around to encourage you when you are down, pray for and with you, and just listen when you need to vent, rage or cry. We have been blessed with this group.....just wished we could have all met under different circumstances....but I guess the ties and the closeness wouldn't be the same. Sorry this is long.....I'm windy:) With prayers, Lynda R. Fw: Welcome to Hello to all. My name is McCombs, I am 29 years old. I am married to my awesome wife Dawn. I have a 6 year old step son and a 2 year old son. I am a community outreach missionary with Freedom Baptist Temple here in Xenia. My wife works at the local hospital and also substitutes school during the school year at my oldest son's Christian School. I started having problems about 10 or 12 years ago when I was in High School. I would get mild to moderate cramping in my hands and feet when I would work out. Occasionally over the next few years after that I noticed that I had a sugar intolerance..ie. I fell asleep a lot after eating a lot of sugar. I told my family doctor about it and he said that I was borderline hypoglycemic and had a mild potassium deficiency. I never thought much about it. About five years ago the cramping got worse and I started having trouble with doing strenuous activity. I was a part time firefighter and I tended to dehydrate very rapidly due to extreme sweating and I would collapse a lot. It started to affect normal activities soon after that. In the past two years I have a lot of slurred to mumbling speech, can't walk more than twenty or thirty feet sometimes and get winded, and I get cramps so bad that I will just ball up and cry. I also started stumbling a lot. Legs buckling, falling back down when I stand up. A year and a half ago I finally went to Physical Medicine and Rehab doctor, and immediately began rigorous testing. He at first suspected possibly MS but my EMG's and MRI and blood test were coming back relatively normal. For six months I was treated by him and finally he gave up trying to figure it out and sent me to a Neurologist. I went to OSU hospital in Columbus. The neurologist there decided that it was something in my muscles. Muscular Dystrophy was ruled out. My Aunt Jannette in Texas talked to me and said she was running through the same symptoms and problems, except she was having seizures. She had been back and forth with her Neurologists on getting a diagnosis. She told me of my cousin Joni's son having a mito cytopathy disorder. I called Joni immediately and she told me everything that was happening with her son. Joni's mom, Donna had passed away 6 months before from complications of ALS (Lou Gehrig's Disease). We talked about it possibly being something genetic. My insurance won't cover a genetic test. But through looking through all the medical issues with my Aunts Donna and Janette, and my cousin Joni's son, my Doctor is now strongly leaning towards a Mito Disorder in me also. I am finally being sent for a muscle biopsy in the next few weeks. I just pray that it will yield something so that I can begin the right treatments. The hardest thing for me is I have no endurance with anything. Normal activities like folding the laundry and doing the dishes can bring painful cramps so bad that I have to sit down for 15 minutes or so. I can't even help teach my 6 year old how to ride his bike. I leave it all in God's hands. It is even more heart breaking to see so many young children with their lives cut short because of this problem. I also pray that there is a cure found sometime soon. I want to thank you for allowing me to join . I need a strong support group of friends that are facing the same thing that I am. My friends and family just don't understand because they look at my age and see how I was a few years ago and they just wonder what happened. Thank you, McCombs Xenia, Ohio 2 Corinthians 1:3-4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Hello , I completely understand what your going through! I have children and it is very hard to be active with them! I Finally was diagnosed in 1995 By Dr.Kissel.It doesn't give you any closure,but I found that you have to have faith in god that he will get you through one day to the next!It took them so long to find out what was wrong.I am still trying to get help with the symptoms I do have.I cannot do anything I used to love! I do pray for you that you will find out! Are you still going to Ohio state? I was wondering who you seen! Columbus,Ohio Hello to all. My name is McCombs, I am 29 years old. I am married to my awesome wife Dawn. I have a 6 year old step son and a 2 year old son. I am a community outreach missionary with Freedom Baptist Temple here in Xenia. My wife works at the local hospital and also substitutes school during the school year at my oldest son's Christian School. I started having problems about 10 or 12 years ago when I was in High School. I would get mild to moderate cramping in my hands and feet when I would work out. Occasionally over the next few years after that I noticed that I had a sugar intolerance..ie. I fell asleep a lot after eating a lot of sugar. I told my family doctor about it and he said that I was borderline hypoglycemic and had a mild potassium deficiency. I never thought much about it. About five years ago the cramping got worse and I started having trouble with doing strenuous activity. I was a part time firefighter and I tended to dehydrate very rapidly due to extreme sweating and I would collapse a lot. It started to affect normal activities soon after that. In the past two years I have a lot of slurred to mumbling speech, can't walk more than twenty or thirty feet sometimes and get winded, and I get cramps so bad that I will just ball up and cry. I also started stumbling a lot. Legs buckling, falling back down when I stand up. A year and a half ago I finally went to Physical Medicine and Rehab doctor, and immediately began rigorous testing. He at first suspected possibly MS but my EMG's and MRI and blood test were coming back relatively normal. For six months I was treated by him and finally he gave up trying to figure it out and sent me to a Neurologist. I went to OSU hospital in Columbus. The neurologist there decided that it was something in my muscles. Muscular Dystrophy was ruled out. My Aunt Jannette in Texas talked to me and said she was running through the same symptoms and problems, except she was having seizures. She had been back and forth with her Neurologists on getting a diagnosis. She told me of my cousin Joni's son having a mito cytopathy disorder. I called Joni immediately and she told me everything that was happening with her son. Joni's mom, Donna had passed away 6 months before from complications of ALS (Lou Gehrig's Disease). We talked about it possibly being something genetic. My insurance won't cover a genetic test. But through looking through all the medical issues with my Aunts Donna and Janette, and my cousin Joni's son, my Doctor is now strongly leaning towards a Mito Disorder in me also. I am finally being sent for a muscle biopsy in the next few weeks. I just pray that it will yield something so that I can begin the right treatments. The hardest thing for me is I have no endurance with anything. Normal activities like folding the laundry and doing the dishes can bring painful cramps so bad that I have to sit down for 15 minutes or so. I can't even help teach my 6 year old how to ride his bike. I leave it all in God's hands. It is even more heart breaking to see so many young children with their lives cut short because of this problem. I also pray that there is a cure found sometime soon. I want to thank you for allowing me to join . I need a strong support group of friends that are facing the same thing that I am. My friends and family just don't understand because they look at my age and see how I was a few years ago and they just wonder what happened. Thank you, McCombs Xenia, Ohio 2 Corinthians 1:3-4 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 -Hi Arron, Welocme to the group. You will find everyone here very suppostive and the site most informative. Like you I find the fatigue the most limiting thing, especially when accompanied by the muscle weakness. Like you, I don't have a definite diagnosis, but just lots of the signs and symptoms. Good wishes to you and your family, Celia-- In , " A ADAMS " wrote: > > > > Hello to all. My name is McCombs, I am 29 years old. I am married to > my awesome wife Dawn. I have a 6 year old step son and a 2 year old son. I > am a community outreach missionary with Freedom Baptist Temple here in > Xenia. My wife works at the local hospital and also substitutes school > during the school year at my oldest son's Christian School. > > I started having problems about 10 or 12 years ago when I was in High > School. I would get mild to moderate cramping in my hands and feet when I > would work out. > > Occasionally over the next few years after that I noticed that I had a sugar > intolerance..ie. I fell asleep a lot after eating a lot of sugar. I told my > family doctor about it and he said that I was borderline hypoglycemic and > had a mild potassium deficiency. I never thought much about it. About five > years ago the cramping got worse and I started having trouble with doing > strenuous activity. I was a part time firefighter and I tended to dehydrate > very rapidly due to extreme sweating and I would collapse a lot. It started > to affect normal activities soon after that. > > In the past two years I have a lot of slurred to mumbling speech, can't walk > more than twenty or thirty feet sometimes and get winded, and I get cramps > so bad that I will just ball up and cry. I also started stumbling a lot. > Legs buckling, falling back down when I stand up. > > A year and a half ago I finally went to Physical Medicine and Rehab doctor, > and immediately began rigorous testing. He at first suspected possibly MS > but my EMG's and MRI and blood test were coming back relatively normal. For > six months I was treated by him and finally he gave up trying to figure it > out and sent me to a Neurologist. I went to OSU hospital in Columbus. > > The neurologist there decided that it was something in my muscles. Muscular > Dystrophy was ruled out. My Aunt Jannette in Texas talked to me and said > she was running through the same symptoms and problems, except she was > having seizures. She had been back and forth with her Neurologists on > getting a diagnosis. She told me of my cousin Joni's son having a mito > cytopathy disorder. I called Joni immediately and she told me everything > that was happening with her son. Joni's mom, Donna had passed away 6 months > before from complications of ALS (Lou Gehrig's Disease). We talked about it > possibly being something genetic. My insurance won't cover a genetic test. > But through looking through all the medical issues with my Aunts Donna and > Janette, and my cousin Joni's son, my Doctor is now strongly leaning towards > a Mito Disorder in me also. I am finally being sent for a muscle biopsy in > the next few weeks. I just pray that it will yield something so that I can > begin the right treatments. > > The hardest thing for me is I have no endurance with anything. Normal > activities like folding the laundry and doing the dishes can bring painful > cramps so bad that I have to sit down for 15 minutes or so. I can't even > help teach my 6 year old how to ride his bike. > > I leave it all in God's hands. It is even more heart breaking to see so > many young children with their lives cut short because of this problem. > > I also pray that there is a cure found sometime soon. > > I want to thank you for allowing me to join . I need a strong > support group of friends that are facing the same thing that I am. My > friends and family just don't understand because they look at my age and see > how I was a few years ago and they just wonder what happened. > > Thank you, > > McCombs > Xenia, Ohio > 2 Corinthians 1:3-4 > > > > > Quote Link to comment Share on other sites More sharing options...
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