- Messages
- 90
I'm still worried that the recent nerve function tests and MRI may have missed something.
About three months ago, I had a flare-up of whole-body muscle pain that lasted a couple of days (not a new symptom, but more severe), followed by a week of leg weakness and tingling, plus periodic electric-shock-type feelings all up and down my leg, and muscle spasms/tightness in my calves. I had another, similar flare-up a couple of weeks later, and this time the tingling was more pronounced - a general tickling sensation all through my legs up to my hip, and more distinct pins and needles in both feet. The weakness and tingling continued, at a lower intensity, for the next few weeks, and I'm only now starting to feel back to baseline.
I had to start walking with a cane, and often wasn't able to get into work (or even leave my apartment) because the weakness affected my mobility so badly. It felt like my lower body was made of half-cooked noodles, and someone had turned on an electric current in the cooking water. Or sometimes, like someone had replaced my feet with tightly-packed bags of wool.
My doctor sent me to a rheumatologist during the first flare-up. Both doctors I talked to suspected CFS/fibro (making them the second set of doctors to bring it up). They ordered and EMG, which came back normal. Later, my primary care doctor ordered MRIs of my brain and spine. The only weird things that showed up were 1) a small, benign brain tumor in my 4th ventricle that needs to be monitored, but is not causing any symptoms, and 2) a possible area of inflammation on the right side of my sacrum, which will require more MRIs, but, she thinks, is unlikely to explain bilateral symptoms.
I know that both fibro and ME/CFS can cause tingling and muscle weakness, but I am worried about a possible misdiagnosis. This feels like a problem that is specific to my legs/feet, and it occurs independent of my level of fatigue/malaise. It also doesn't seem connected to activity levels.
My questions: is there any point in continuing to explore the possibility of MS, myasthenia gravis, or another nerve-related disease when the initial tests are showing up clear? Does it sound like something other than (or in addition to) ME/CFS could be going on?
About three months ago, I had a flare-up of whole-body muscle pain that lasted a couple of days (not a new symptom, but more severe), followed by a week of leg weakness and tingling, plus periodic electric-shock-type feelings all up and down my leg, and muscle spasms/tightness in my calves. I had another, similar flare-up a couple of weeks later, and this time the tingling was more pronounced - a general tickling sensation all through my legs up to my hip, and more distinct pins and needles in both feet. The weakness and tingling continued, at a lower intensity, for the next few weeks, and I'm only now starting to feel back to baseline.
I had to start walking with a cane, and often wasn't able to get into work (or even leave my apartment) because the weakness affected my mobility so badly. It felt like my lower body was made of half-cooked noodles, and someone had turned on an electric current in the cooking water. Or sometimes, like someone had replaced my feet with tightly-packed bags of wool.
My doctor sent me to a rheumatologist during the first flare-up. Both doctors I talked to suspected CFS/fibro (making them the second set of doctors to bring it up). They ordered and EMG, which came back normal. Later, my primary care doctor ordered MRIs of my brain and spine. The only weird things that showed up were 1) a small, benign brain tumor in my 4th ventricle that needs to be monitored, but is not causing any symptoms, and 2) a possible area of inflammation on the right side of my sacrum, which will require more MRIs, but, she thinks, is unlikely to explain bilateral symptoms.
I know that both fibro and ME/CFS can cause tingling and muscle weakness, but I am worried about a possible misdiagnosis. This feels like a problem that is specific to my legs/feet, and it occurs independent of my level of fatigue/malaise. It also doesn't seem connected to activity levels.
My questions: is there any point in continuing to explore the possibility of MS, myasthenia gravis, or another nerve-related disease when the initial tests are showing up clear? Does it sound like something other than (or in addition to) ME/CFS could be going on?