BeachBum
Member
- Joined
- Apr 30, 2018
- Messages
- 20
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- US
- State
- NJ
- City
- By the beach
Hi all,
https://www.alsforums.com/forum/do-...clean-clinical-exam-now-gait-abnormality.html
Above is a link to my story till about May/June 2018. I have no idea what’s wrong with me, so I’m posting here looking for direction.
I have seen multiple neurologists about my symptoms since then. Including 2 neuromuscular specialists and a neurologist at the Mayo Clinic. Each visit is similar, they ask questions about my symptoms then perform a neurological exam. I do not have UMN signs and I can perform each task asked of me. The issue is they aren’t testing where my weakness is: my feet.
I fasiculate below my knees constantly, especially in the arch of my feet. It started in the right, and it’s moved to the left. My feet are atrophied, especially the right between my tendons. This creates weakness inmy toes, especially the middle ones. They feel like sponges with each step I take, providing no force to propel my body when I walk. I will post a photo later when I’m off my phone (can’t attach from here) — I have watched the muscle disintegrate since January. I can stand on my toes but my feet, but not my calves are weak. My peroneous longus muscle in my right foot is a tiny ball where there used to me a long muscle. My calves are small and softer. When I stand, my ankles collapse inward — it feels like I’m holding myself ankles up when I stand and walk. I distribute weight to the outside of my feet. My feet ache constantly, my knee and ankle joints ache badly too. I still get intermittent cold water sensations in my shins. I don’t have pins and needles anymore — in fact I believe what I thought were pins and needles in the past was buzzing. In short, fasiculations, atrophy and weakness — almost completely confined to my feet. I limp when I walk and it keeps getting worse.
I had a repeat EMG last week at Mayo. It’s clean, BUT they did not test feet because simply stated, “abnormalities in the feet are normal”. They tested my shin, my tight and hip along with paraspinal muscles. My CK adolase and pernicious anemia (B12) levels are in normal range. I have had additional bloodwork with abnormalities but I don’t know who to see about them, what type of doctor to see. I had an 80 minute MRI of my lumbar and thoracic spinal regions on Friday. There are issues but I think they are minor. I don’t understand the medical language.
My question for the community is this: where do I go from here? Does anyone have a story like mine? I am losing my ability to walk. Literally. I think I have maybe 3 months till I fit myself for an AFO. I don’t know what else to test for or what to do. A part of my problem is I go to different neuros to get opinions from the best, most experienced doctors I can find — which seems like the right thing to do with one major caveat — they don’t see my progression over time. They don’t watch my feet lose muscle one month to the next. It feels like they are waiting till I can no longer stand on my toes before they go deep down the rabbit hole to find something. But they can’t find what’s wrong. I hang around these forums because I genuinely believe I have MND. Maybe a flail leg or PMA variant. I hang around these forums because everyone sounds like me. A slow moving train where strength and muscle is lost each month all while twitching incessantly reminds me of that my body is under attack.
Emotionally, it’s crushing. My family is scared. I’m terrified. I’m making no long term plans for the future. It’s like someone has vacuumed the joy from life. I’m living a private hell.
Idk what to do it where to turn.
https://www.alsforums.com/forum/do-...clean-clinical-exam-now-gait-abnormality.html
Above is a link to my story till about May/June 2018. I have no idea what’s wrong with me, so I’m posting here looking for direction.
I have seen multiple neurologists about my symptoms since then. Including 2 neuromuscular specialists and a neurologist at the Mayo Clinic. Each visit is similar, they ask questions about my symptoms then perform a neurological exam. I do not have UMN signs and I can perform each task asked of me. The issue is they aren’t testing where my weakness is: my feet.
I fasiculate below my knees constantly, especially in the arch of my feet. It started in the right, and it’s moved to the left. My feet are atrophied, especially the right between my tendons. This creates weakness inmy toes, especially the middle ones. They feel like sponges with each step I take, providing no force to propel my body when I walk. I will post a photo later when I’m off my phone (can’t attach from here) — I have watched the muscle disintegrate since January. I can stand on my toes but my feet, but not my calves are weak. My peroneous longus muscle in my right foot is a tiny ball where there used to me a long muscle. My calves are small and softer. When I stand, my ankles collapse inward — it feels like I’m holding myself ankles up when I stand and walk. I distribute weight to the outside of my feet. My feet ache constantly, my knee and ankle joints ache badly too. I still get intermittent cold water sensations in my shins. I don’t have pins and needles anymore — in fact I believe what I thought were pins and needles in the past was buzzing. In short, fasiculations, atrophy and weakness — almost completely confined to my feet. I limp when I walk and it keeps getting worse.
I had a repeat EMG last week at Mayo. It’s clean, BUT they did not test feet because simply stated, “abnormalities in the feet are normal”. They tested my shin, my tight and hip along with paraspinal muscles. My CK adolase and pernicious anemia (B12) levels are in normal range. I have had additional bloodwork with abnormalities but I don’t know who to see about them, what type of doctor to see. I had an 80 minute MRI of my lumbar and thoracic spinal regions on Friday. There are issues but I think they are minor. I don’t understand the medical language.
My question for the community is this: where do I go from here? Does anyone have a story like mine? I am losing my ability to walk. Literally. I think I have maybe 3 months till I fit myself for an AFO. I don’t know what else to test for or what to do. A part of my problem is I go to different neuros to get opinions from the best, most experienced doctors I can find — which seems like the right thing to do with one major caveat — they don’t see my progression over time. They don’t watch my feet lose muscle one month to the next. It feels like they are waiting till I can no longer stand on my toes before they go deep down the rabbit hole to find something. But they can’t find what’s wrong. I hang around these forums because I genuinely believe I have MND. Maybe a flail leg or PMA variant. I hang around these forums because everyone sounds like me. A slow moving train where strength and muscle is lost each month all while twitching incessantly reminds me of that my body is under attack.
Emotionally, it’s crushing. My family is scared. I’m terrified. I’m making no long term plans for the future. It’s like someone has vacuumed the joy from life. I’m living a private hell.
Idk what to do it where to turn.