allie/chase dad
Member
- Joined
- Mar 13, 2012
- Messages
- 20
- Reason
- Learn about ALS
- Country
- US
- State
- ky
- City
- lexington
Hello everyone.
First off I want to thank all the kind and knowledgable folks on here for their time and compassion. Reading this forum has been both informative and inspirational. In no way do I want to disrespect or waste the time of the many people battling (PALS and CALS) this difficult disease. I have had the onset of some symptoms and wish to reach out to this community for advice, thoughts and all of the other wonderful things you guys provide.
I'm a 35 Y/O male in very good health (daily runner-marathons, weight lifting) with a previous history significant only for celiac disese-asymptomatic. Onset of infrequent fasiculatons primarily in lower extremities 3months ago. Slow steady increase in frequency and location since. Now nearly constant and located in feet, legs, trunk, shoulders, arms, hands, face. None in tongue or eye/eyelid. Roughly a month ago noticed fatigue/cramping in hands when holding steering wheel on long trips, mixing pancake batter, holding handle of lawn fertilizer. Again slow steady increase in this and while still subjective and mild now notice fatigue when wearing tight gloves at work and writing. Also a month ago i noticed mild fatigue like symptoms in the muscles of facial expresson and chewing. This has been stable.
Up to this point I was minimally concerned. Last week when walking on my heels i noticed weakness in Left ankle dorsiflexion. This has been confirmed by a friend at work (orthopedic surgeon). It is not foot drop-has not caused disabaility but is clinical weakness. Of note I have no pain, numbness, parasthesias of either upper or lower etremities. After suffering new and profound anxiety at home for a week I decided to see my primary care doctor. He was encouraging. Physical exam supported above. Battery of blood tests have all come back normal (thyroid, Ca, na, k, hepatitis, b12/folate and more) He will be speaking to a neurologist and likely will have me in to see one in the coming days or weeks.
I know I need to take a deep breath untill I see the neurologist/get the EMG. As many of you know that is easier said than done. I am trying. I am loving on and cherishing the best 3 year old, 6 year old and wife the world has ever seen (biased opinion i know).
I consider many on this board to be true experts. In many ways more so than neurologists. You guys are living it. Either with the disease or with loved ones with it. I value your thoughts. These are my two main ones currently. 1. The time course and body wide symptoms seem to favor BFS or something else. 2. I can't seem to remedy the leg weakness and fasiculations without sensory findings.
Sorry for the long post but something about expressing myself this fully has already made me feel a little better. Thank you in advance and I think and pray for all of those affected by this disease.
Steve
First off I want to thank all the kind and knowledgable folks on here for their time and compassion. Reading this forum has been both informative and inspirational. In no way do I want to disrespect or waste the time of the many people battling (PALS and CALS) this difficult disease. I have had the onset of some symptoms and wish to reach out to this community for advice, thoughts and all of the other wonderful things you guys provide.
I'm a 35 Y/O male in very good health (daily runner-marathons, weight lifting) with a previous history significant only for celiac disese-asymptomatic. Onset of infrequent fasiculatons primarily in lower extremities 3months ago. Slow steady increase in frequency and location since. Now nearly constant and located in feet, legs, trunk, shoulders, arms, hands, face. None in tongue or eye/eyelid. Roughly a month ago noticed fatigue/cramping in hands when holding steering wheel on long trips, mixing pancake batter, holding handle of lawn fertilizer. Again slow steady increase in this and while still subjective and mild now notice fatigue when wearing tight gloves at work and writing. Also a month ago i noticed mild fatigue like symptoms in the muscles of facial expresson and chewing. This has been stable.
Up to this point I was minimally concerned. Last week when walking on my heels i noticed weakness in Left ankle dorsiflexion. This has been confirmed by a friend at work (orthopedic surgeon). It is not foot drop-has not caused disabaility but is clinical weakness. Of note I have no pain, numbness, parasthesias of either upper or lower etremities. After suffering new and profound anxiety at home for a week I decided to see my primary care doctor. He was encouraging. Physical exam supported above. Battery of blood tests have all come back normal (thyroid, Ca, na, k, hepatitis, b12/folate and more) He will be speaking to a neurologist and likely will have me in to see one in the coming days or weeks.
I know I need to take a deep breath untill I see the neurologist/get the EMG. As many of you know that is easier said than done. I am trying. I am loving on and cherishing the best 3 year old, 6 year old and wife the world has ever seen (biased opinion i know).
I consider many on this board to be true experts. In many ways more so than neurologists. You guys are living it. Either with the disease or with loved ones with it. I value your thoughts. These are my two main ones currently. 1. The time course and body wide symptoms seem to favor BFS or something else. 2. I can't seem to remedy the leg weakness and fasiculations without sensory findings.
Sorry for the long post but something about expressing myself this fully has already made me feel a little better. Thank you in advance and I think and pray for all of those affected by this disease.
Steve