Hello
| Posted: August 31st 2010 | |
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LindaMac7 |
Print Hi, my name is Linda. I am 58 y/o and have experienced numerous symptoms throughout my adult life that have led to a "possible" diagnosis of mitochondrial disease. Nothing if firm but I will share some of my syptoms and ask if they sound familiar to anyone out there. I began having what I would describe as heart palpitations in my late 20s. It turned out that any exertion at all would lead to an immediate & extreme heart rate increase that would leave me breathless and weak. After exercise it took a lengthy period of time for my heart rate to go back to normal. Ultimately my pacing cells were ablated and a pacemaker was inserted. I am totally pacemaker dependent and have been for over 20 years. That should have resolved my exercise intolerance but it did not and that is when they began to toss around the mito diagnosis. All preliminary tests indicated a mito problem but the first muscle biopsy was borderline and the second was deemed normal despite the fact that the physician who examined the tissue while it was fresh believed he saw ragged red fibers. Two years ago I had a CT scan which revealed bilateral ischemic brain lesions. A subsequent CT scan did not show the brain lesions so nothing has been done about that. Since I cannot have an MRI due to the pacemaker there has been no real follow-up. In the past year I have fallen at least 15 times often for no discernable reason and most recently I lost my voice for over a month. I can speak again but my voice is hoarse and raspy and it fades if I talk for any lenght of time. I had noticed about a year ago that I could no longer reach notes while singing. My frustration level has reached the point that I do not want to go to any more doctors and I am tired of feeling like no one takes me seriously. It is primarily the complete exhaustion and inabliity to exercise that bothers me. My life has been miserable for over 20 years and no one seems to want to help. Does any of this sound familiar to anyone and, if so, how were you helped? I live in Alaska where medical care is rather limited but I would be willing to travel to find a good doctor. Thanks for any support or advice you may have. |
Dear Linda,My mito is not
Submitted by Syd on Wed, 09/01/2010 - 6:36pm.
Dear Linda,
My mito is not similar to yours, as my heart rate drops, when I am active. The exhaustion and inability to exercise I relate too extremely well. Yes I can feel how your life has been miserable for over twenty years and no help, like no one cares. The doctors kept telling me it was in my head and hypoglcemia. After a muscle biopsy and I was confirmed with mitochondria disease no metabolic doctor wanted me. I live in Eastern Oregon and no doctor knows anything about mito and will do no research on it either. I get the impression the cardiologist will not move outside of their field of education --- heart and heart only. So I ended up going to a grief counselor who helped me step away from this medical environment. You do not seem menatlly tormented, yet maybe you feel a contempt for the medical field? If you have an ax to grind with the mdeical establishment I can understand this fully.
You can email me at sydneyzoe7@gmail.com and I will do my best to be there for you. Then again you seem to have held yourself above water through these twenty some years and you have a remarkable spirit.
Your presence is significant!
Syd
Hi Linda,I too have been
Submitted by kbdvm51 on Mon, 09/06/2010 - 6:18pm.
Hi Linda,
I too have been plagued by a variety of symptoms over the years. One of the things that I have read over and over again about mito is that symptms can vary greatly; even family members with the same genetic defect can have very different symptom profiles. It has only been in the last few years that the medical profession has realized that this can be an adult onset disease. The first thing that should have been a clue to my disease was an episode of gastroparesis when I was in my thirties. I am now 59 and recently had a muscle biopsy that showed mitochondrial myopathy. The weird thing is that they weren't even looking for that diagnosis. I had been having muscle pain and what seemed more like nerve pain for over a year before the biopsy was done. I know that is a relatively short period of time to get to a diagnosis. When I found a web site with the list of possible mitochondrial diease symptoms all I could think was "why did it take them so long to get to this diagnosis?". Heart symptoms are pretty common with this disease. I have had palpitations for much of my life and developed atrial fibrillation a few years ago. I am lucky that I live in Boston and have access to excellent care. Despite the availability of excellent care in this area there is still a significant shortage of mitochondrial disease experts. My biopsy result was reported in early April and the earliest I can see the specialist is October. I can't imagine what it must be like in Alaska. If you have a supportive local neurologist or primary care doctor you might consider a consultation with Dr. Fran Kendall. She will meet with you on line. Her practice is called Virtual Medical Practice.
Feel free to e-mail me at kbdvm@aol.com . It would be nice to connect to another adult struggling with this disease.
Kathy