help1127
Active member
- Joined
- Nov 19, 2013
- Messages
- 95
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- FL
- City
- Orlando
Good Afternoon,
Let me start off by saying that I am sorry if these questions become redundant. I know I'm on a ALS forum and I'm relying on PALS to give me advice. With that said I like to give a brief description of my symptoms since they started.
2011- started with muscle twitching in my abdomen when I would lay at night. Didnt pay much mind to them as they only came once in a while.
2013- started twitching all over my body. At times they were worse than others.
2014 - twitching continued and I was having a felt slight weakness in my right leg and my legs would shake uncontrollably when walking down stairs. Made my first appt to see a neuromuscular specialist in town who check my reflexes and performed and emg. Said my reflexes where somewhat brisk but not pathologic and that my emg was clean. "NO ALS"
2014- Continued feeling twitching and made an appointment with USF who again did an emg and physical "NO ALS"
2015 - Continued with the twitching feeling of weakness in my leg plus stiffness in my torso. Made an appointment with UF for a third opinion who repeated an emg and physical. Said Brisk reflexes, positive Hoffman, no clonus, strength 5+ throughout.
2017 - Returned to UF still having issues with my legs shaking, twitching and some weakness in my left leg. Performed another emg and said I may have some type of Hereditary Motor Neuropathy.
2018 - Returned for a follow up visit Doctor says he retracts his diagnosis of Hereditary Motor Neuropathy, and not to worry that its not a ALS or a motor neuron disease since he has not found any weakness in the years he has been following me.
Fast forward to today, I been working out and now I developed issues with my left elbow which appear to be Tennis elbow, twitching in my left arm shoulder, right arm and legs. Arms tendons are tight and now feeling it in my right leg. Shoulders hurt when I sleep plus having pain and discomfort when trying to lift my left arm.
I'm scheduled for another appointment on the 20th for another emg to see what's going on and hopefully I don't get an ALS diagnosis after 10 years since my symptoms started.
Has anyone heard of anyone getting a diagnosis after 10 years? I just doesn't seem to fit the timeline.
Let me start off by saying that I am sorry if these questions become redundant. I know I'm on a ALS forum and I'm relying on PALS to give me advice. With that said I like to give a brief description of my symptoms since they started.
2011- started with muscle twitching in my abdomen when I would lay at night. Didnt pay much mind to them as they only came once in a while.
2013- started twitching all over my body. At times they were worse than others.
2014 - twitching continued and I was having a felt slight weakness in my right leg and my legs would shake uncontrollably when walking down stairs. Made my first appt to see a neuromuscular specialist in town who check my reflexes and performed and emg. Said my reflexes where somewhat brisk but not pathologic and that my emg was clean. "NO ALS"
2014- Continued feeling twitching and made an appointment with USF who again did an emg and physical "NO ALS"
2015 - Continued with the twitching feeling of weakness in my leg plus stiffness in my torso. Made an appointment with UF for a third opinion who repeated an emg and physical. Said Brisk reflexes, positive Hoffman, no clonus, strength 5+ throughout.
2017 - Returned to UF still having issues with my legs shaking, twitching and some weakness in my left leg. Performed another emg and said I may have some type of Hereditary Motor Neuropathy.
2018 - Returned for a follow up visit Doctor says he retracts his diagnosis of Hereditary Motor Neuropathy, and not to worry that its not a ALS or a motor neuron disease since he has not found any weakness in the years he has been following me.
Fast forward to today, I been working out and now I developed issues with my left elbow which appear to be Tennis elbow, twitching in my left arm shoulder, right arm and legs. Arms tendons are tight and now feeling it in my right leg. Shoulders hurt when I sleep plus having pain and discomfort when trying to lift my left arm.
I'm scheduled for another appointment on the 20th for another emg to see what's going on and hopefully I don't get an ALS diagnosis after 10 years since my symptoms started.
Has anyone heard of anyone getting a diagnosis after 10 years? I just doesn't seem to fit the timeline.