Silence
Senior Member
- Messages
- 102
- Location
- Northern CA
About two months ago i thought i was going through a crash from walking too much. One of the things that bothered me at the time was calf weakness and soreness. It was just like any other crash, I assumed. But after resting in bed for 2 months, closer to 3 actually, My calf muscles have only gotten worse, much worse actually, to the point where i can barely stand. I also noticed my heart rate elevating to around 90-100 at rest.
One of my main symptoms of cfs/ me is chronic diarrhea which led me to believe that my calf muscle weakness and elevated heartrate was due to potassium deficiency. Went to the E.R. because i couldnt book an appointment with my doctor until a month and at this point these symptoms were starting to really freak me out. Went to the E.R and had a comprehensive metabolic panel done. Bingo! my potassium was 3.2. I was so relieved that it was just a potassium deficiency. I started supplementing for a few weeks with potassium chloride and high potassium foods and now my potassium is 3.4. Still on the low side, but the scary thing is, is that my symtpms arent letting up, not even a bit. And maybe getting worse.
Hmm. So at this point i wondering to myself: if this is not a potassium deficiency that is causing my extreme muscle weakness and pain with elevatefd heart rate, then what is it?
Feeling really frustrated, I book an urgent appointment with my neurologist. At the apppointment he doesnt really say much, just kinda casually asks me about my history and onset of current symptoms. Towards the end he fills an order for blood test and an urgent emg and nerve conduction study.
blood test:
cpk( creatine kinase) - 1333 (33-124) elevated
aldolase - 288 ( cant remember standard range, but elevated also)
b12- 232 (193-934) low end of normal
mma- havent got it back yet.
vitamin e- havent got back yet.
lactate dehydrogenase- high end of normal
I log on to my health portal and view these test and research what elevated ck and aldolase mean. The first thing that pops up is ALS. At this point im sorta freaking out- "ALS and CFS"!!! After some more research and a dose of benzo, i find out that there are many reasons why these lab values show up. A couple days have gone by and my appointment for emg and ncs have been done. The testing showed moderate to severe muscle and nerve damage. Those were the words he said to me.
I asked him if it could be caused by a b12 deficiency and he said, straight up, No. Uhh. Then is it ALS? I asked. he said most likely not. Uh... Then what is it. Thinking really hard... after a few moments ... he says i need a muscle biopsy and along with the symptoms i have from cfs/ me, its probably some kind of mitochondrial myopathy.
After days and days of going to the e.r. and neuro and having my calfs shocked to hell. I am just tired and need to rest. I am still waiting on other blood test to come back and for an MRI to be done.
At this point I am led to believe that these symptoms have nothing to do with CFS and am in a worse crash than i began. I am really confused whats going on wih my legs as they are gradually getting worse.
Has anyone gone through sometting like this or have any ideas what to look into as I am just exhauseted and just want some answers. Probably will see a mitochondrial specialist ... Maybe Dr. Naviaux can help as he has looked into cfs and is a mito specialist.
Thanks for reading.
One of my main symptoms of cfs/ me is chronic diarrhea which led me to believe that my calf muscle weakness and elevated heartrate was due to potassium deficiency. Went to the E.R. because i couldnt book an appointment with my doctor until a month and at this point these symptoms were starting to really freak me out. Went to the E.R and had a comprehensive metabolic panel done. Bingo! my potassium was 3.2. I was so relieved that it was just a potassium deficiency. I started supplementing for a few weeks with potassium chloride and high potassium foods and now my potassium is 3.4. Still on the low side, but the scary thing is, is that my symtpms arent letting up, not even a bit. And maybe getting worse.
Hmm. So at this point i wondering to myself: if this is not a potassium deficiency that is causing my extreme muscle weakness and pain with elevatefd heart rate, then what is it?
Feeling really frustrated, I book an urgent appointment with my neurologist. At the apppointment he doesnt really say much, just kinda casually asks me about my history and onset of current symptoms. Towards the end he fills an order for blood test and an urgent emg and nerve conduction study.
blood test:
cpk( creatine kinase) - 1333 (33-124) elevated
aldolase - 288 ( cant remember standard range, but elevated also)
b12- 232 (193-934) low end of normal
mma- havent got it back yet.
vitamin e- havent got back yet.
lactate dehydrogenase- high end of normal
I log on to my health portal and view these test and research what elevated ck and aldolase mean. The first thing that pops up is ALS. At this point im sorta freaking out- "ALS and CFS"!!! After some more research and a dose of benzo, i find out that there are many reasons why these lab values show up. A couple days have gone by and my appointment for emg and ncs have been done. The testing showed moderate to severe muscle and nerve damage. Those were the words he said to me.
I asked him if it could be caused by a b12 deficiency and he said, straight up, No. Uhh. Then is it ALS? I asked. he said most likely not. Uh... Then what is it. Thinking really hard... after a few moments ... he says i need a muscle biopsy and along with the symptoms i have from cfs/ me, its probably some kind of mitochondrial myopathy.
After days and days of going to the e.r. and neuro and having my calfs shocked to hell. I am just tired and need to rest. I am still waiting on other blood test to come back and for an MRI to be done.
At this point I am led to believe that these symptoms have nothing to do with CFS and am in a worse crash than i began. I am really confused whats going on wih my legs as they are gradually getting worse.
Has anyone gone through sometting like this or have any ideas what to look into as I am just exhauseted and just want some answers. Probably will see a mitochondrial specialist ... Maybe Dr. Naviaux can help as he has looked into cfs and is a mito specialist.
Thanks for reading.