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Hi everyone, I'm a 32 year old female. I am pretty close to receiving a diagnosis--I have an appt on the 21st to go over my muscle biopsy results. Just reaching out more for the sake of community as I feel pretty alone and don't want to wear down my family and friends with my neuroticism surrounding this. I'd like to share my story/symptoms...if that's okay. I promise to update when I find out what it is.
The symptoms that started me on this journey started about 4 years ago when my middle child turned 1. Just fatigue and joint pain--with a mildly elevated RA factor led me to my rheumatologist. RA factor returned to normal after going gluten free but the fatigue remained. I started the GAPS diet and felt phenomenal, better than I had in years. I felt confident that I had control over it now.
At the end of August, though it all changed. I'm not sure what triggered it, [possibly a deficiency in calcium, because dairy was causing some of my gastro symptoms and I wasn't eating enough dark leafy greens to compensate]. Anyway I had an episode where I thought I smelled smoke in Target and my vision blacked out for a split second. Heart started racing and felt like I couldnt catch my breath. I left when I felt better and while driving home in the rain, ambulances with their sirens were rushing by and I felt stressed---so then my heart started racing uncontrollably and I felt I couldn't breathe. I went to the urgent care, they sent me to the ER, where the dr suggested seeing a neurologist. After that episode all of the fatigue and joint pain in my hips came back. I thought it would wane but it never went away. By November I was having trouble climbing the stairs without feeling like my legs were going to quit. My heart would race and I felt like I couldn't breathe again. I had a rheumatologist appt on the 13th of Nov and told her the whole story. She was intrigued, and stood to do an exam. She instructed me to lift my knee while sitting and told me to not let her push it down. I couldn't push against her. This happened in both legs. She sent me for an EMG right away which revealed myopathy in every muscle tested without membrane instability--the nerve conduction study was normal. By the weekend I was admitted to the hospital because the weakness had progressed to the point where I could barely walk and my upper arms were suddenly as weak as my legs. I was losing my breath and feeling dizzy from just wiping my cabinets down. I had also lost seven pounds from Monday to Saturday. My muscles were wasting away, you could see the bones in my arms, all of my collar bone and my upper thigh had deteriorated, so that my leg wasn't the same shape as before. At night, I would wake up gasping for air and then my heart would race again. I was so worried that my heart was affected by whatever was causing the other myopathy.
In the hospital they did the muscle biopsy and an echocardiogram. The echo was normal, thankfully. The breathing issues appear to be from a weakened diaphragm and other abdominal muscles used in breathing--so laying flat, the act of standing/sitting, reaching above my head all cause my oxygen levels to drop and my heart rate to speed up.
What is strange to me is that in addition to exertion, any amount of stress seems to cause significant muscle weakness, even what I would consider good stress--the kind that energizes me, like family visiting or getting ready to host a party--something Im looking forward to. There seems to be a strange misfiring--miscommunication where my body just wants to shut down. WHen I google this, there do seem to be medical articles that discuss oxidative stress and muscle performance, and the neurological role of stress on our body--but it seems strange for it to be so severe.
I guess I'll know more when I get the results next week. It's just driving me nuts waiting and not knowing. From what I gathered based on the EMG, and what the neurologists said at the hospital they are suspecting either a form of muscular dystrophy or a mitochondrial muscle disease.
If you read all of that, you are a saint, and I thank you. Guess I don't really have a true question but I welcome all personal experiences to be shared. Thanks!
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