Hello, I'm new here. 35 and female.
8 months ago I began feeling weakness in my hands/arms/shoulders and feet/ankles/legs (couldn't squat). Now this weakness in my legs has reflected itself with pain in my knees, low back(lumbar-sacral)/hips, neck and arm pain, stiff sensations in my hands/arms/legs. My finger grip feels weak, hands feel clumsy, I walk wobbly/unsteady, my balance feels like its being pulled backwards, the ground below my feet feels unstable(my depth perception is off, stepping/walking on an uneven sidewalk feels abnormal). I look at my feet to make sure they move right when walking. I have had twitching in my entire arms, legs, hips/behind/ribs for 8 months now.
I've had a brain/cervical MMI that was "normal", except that it had "scattered punctate Flair changes in the periventricular and subcortical frontal in the white matter". I've had a ton of normal blood test, including normal myasthenia gravis antibody tests, and don't know how to proceed with my lack of diagnosis, I feel like I'm losing my strength, my mind, to go on and fight this, to find someone to take me seriously and push to figure out what's happening, I feel like these doctors don't care. The first 2 neuros did not take me seriously and told me to "seek other help". They say "no MS" because your brain MRI was normal(I don't believe them). I have read that MRI may not show typical lesions, even with disease present, and I have some changes afterall. I know they are wrong, 8 months of weakness, twitching, body pains, suffering...I have no job, my insurance and medical bills are bleeding me dry, how cruel of these doctors, who are suppose to help us, instead to blame us. Like I'm spending my money and going through stressful testing for fun...Sorry for venting, but I have no where else to go. I feel in despair, I need to find that doctor who will be interested in perusing all physical(diseases) angles of my muscles losing strength (excluding my mental). If anyone can share my experience, provide some helpful advice, direct me to a neurologist in San Francisco who will not brush me off, I would be grateful.
I feel so alone, and with no diagnosis, my life has stopped, and my body is not getting any better. No diagnosis means no chance to apply for disability, no chance for some closure and no making plans to adjust to new circumstances, no stress relief for me, my husband, my mom, and perhaps delayed treatment if this is something that could be slowed down or cured, whether MS or something else...
I hope that I've come to a place where peoples experiences going through the neurological maze will be able to help me too. Please help...
Anni
8 months ago I began feeling weakness in my hands/arms/shoulders and feet/ankles/legs (couldn't squat). Now this weakness in my legs has reflected itself with pain in my knees, low back(lumbar-sacral)/hips, neck and arm pain, stiff sensations in my hands/arms/legs. My finger grip feels weak, hands feel clumsy, I walk wobbly/unsteady, my balance feels like its being pulled backwards, the ground below my feet feels unstable(my depth perception is off, stepping/walking on an uneven sidewalk feels abnormal). I look at my feet to make sure they move right when walking. I have had twitching in my entire arms, legs, hips/behind/ribs for 8 months now.
I've had a brain/cervical MMI that was "normal", except that it had "scattered punctate Flair changes in the periventricular and subcortical frontal in the white matter". I've had a ton of normal blood test, including normal myasthenia gravis antibody tests, and don't know how to proceed with my lack of diagnosis, I feel like I'm losing my strength, my mind, to go on and fight this, to find someone to take me seriously and push to figure out what's happening, I feel like these doctors don't care. The first 2 neuros did not take me seriously and told me to "seek other help". They say "no MS" because your brain MRI was normal(I don't believe them). I have read that MRI may not show typical lesions, even with disease present, and I have some changes afterall. I know they are wrong, 8 months of weakness, twitching, body pains, suffering...I have no job, my insurance and medical bills are bleeding me dry, how cruel of these doctors, who are suppose to help us, instead to blame us. Like I'm spending my money and going through stressful testing for fun...Sorry for venting, but I have no where else to go. I feel in despair, I need to find that doctor who will be interested in perusing all physical(diseases) angles of my muscles losing strength (excluding my mental). If anyone can share my experience, provide some helpful advice, direct me to a neurologist in San Francisco who will not brush me off, I would be grateful.
I feel so alone, and with no diagnosis, my life has stopped, and my body is not getting any better. No diagnosis means no chance to apply for disability, no chance for some closure and no making plans to adjust to new circumstances, no stress relief for me, my husband, my mom, and perhaps delayed treatment if this is something that could be slowed down or cured, whether MS or something else...
I hope that I've come to a place where peoples experiences going through the neurological maze will be able to help me too. Please help...
Anni
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