Mitochondrial Disease

Hello, my husband also had some severe sleeping issues. His neurologist prescribed him a prescription, and it has helped a lot. Being fatigued all the time is difficult. Being that you just were given the news on his diagnosis it's a lot to digest. Sweetie, you are not alone in this. There are many different types of mitochondria disease's. Be sure to visit the UMDF.org Its a great resource site to get information on Mitochondria disorders. A mitochondria person looks OK but inside their body is exhausted. My husband will play one game of chess with our son and his brain is even tired. He has had to work at managing his limited energy. Once your Doctor gets his muscle biopsy results back you'll have better direction on what to do. Once you get that back there are quite a few nutritional supplements that your doctor may put him on to help. You will be in our thoughts and Prayers, Leslie

Please read the patient bill of rights online. You may want to research to see what your legal rights are to make the decisions that are best for you and your husband.

Thank you I am feeling a bit shell shocked at the moment. And that does help. I feel like they think I am completely incompetent.

Hi vjones7, So sorry to hear of you and your husband's situation. You can check with the UMDF website to see if this pertains to a mitochondrial disease or not. http://www.umdf.org Sure hope that your husband gets better, and that you find some answers soon.

Thank you for starting this support group! I hope this can be the first of many conversations and stories shared about this disfunction. Feel free to share about your journey living with this disease too.

For those who take care of someone with a type of mitochondrial myopathy, we'd like to hear about your journey too. Feel free to invite those in your network to join!

Kind regards, Sho from the Caring.com Community Team

Leslie said

Hi... my name is Leslie and almost 20 years ago I began a journey with my husband who was diagnosed with a mitochondrial disease. It started out by Mark being misdiagnosed, unnecessary surgeries and going threw quite a number of doctors. One Doctor even said it was all in his head! We finally were sent to Ucla where we saw one doctor who sent us to another doctor who then sent us to a Neurologist where a barrage of tests were done and still no diagnosis. The Neurologist wanted to do one last test ( a muscle biopsy) before sending it out to a doctor on the east coast to see if he could help with a diagnosis. Mark's symptoms were worsening and was put on seizure meds. Once the pathologist had the muscle biopsy it took 6 months to get the results. All the waiting and anticipation that went on had come down to the much awaited phone call. Being told that your husband has a disease was actually a relief for me. The unknown is difficult, but with this we could start to go forward. And we did. We had a lot of people who stood with us, and helped us in a host of ways. Our youngest child needed care when we would have to travel to Ucla or when Mark was hospitalized. My heart still cries with gratitude for all those who helped from dinners, childcare, prayers, hugs, and those who would listen to me. You have to remember this was nearly 20 years ago, no Mitochondria support groups existed. I felt very alone. If I could just get some understanding from others going through this same disease..... It did come but it took years and so we felt solo for a time but it was amazing how we did come in contact with others we did meet along the way. This site will be a help to those who need an ear, or for us to also hear for our lives. We are constantly learning along the way and we take one day at a time. We are thankful for our children who care so much.