Hitemhard14
New member
- Joined
- Sep 7, 2013
- Messages
- 6
- Reason
- Learn about ALS
- Country
- US
- State
- NC
- City
- Waxhaw
Hi All,
First, thanks in advance for taking the time to read / respond. I will try to be as short as possible but I do want to paint an accurate picture so please have patience with me.
I am a 39 year old male who has been active my entire life except for the past year and a half with increasing family / work commitments.
My only diagnosed conditions are
1. "moderate cervical stenosis @ C-3 & C-4.
2. Gerd
Symptoms
1. Weakness and pain in hips for nearly a year. I can still run (not a lot though) and walk though feel unsteady at times, especially in the moring.
2. Stiffness / soreness and mild cramping in hamstrings since March. There are a few occasions where I actually feel like the old me but even a little excercise makes the condition worse.
3. Fasciculations in calves since June. They are constant; sometimes worse than others. Same stiffness / soreness and mild cramping as noted with hamstrings.
4. Toe cramping that comes and goes. Occassional pain (feels like subtle cramp) in plantar area of foot.
5. Feeling of heaviness when breathing that varies in severity from day to day. Today, as i am typing this, I am not having it at all. Winded very easily.
6. Constant acid reflux. Been through several meds. On Nexium and probiotic now hoping for better reults.
7. Muscle cramping in thoracic area of back. Some days, pain is a 5/6 on a 10 scale.
Tests
1. MRI of head, cervical spine, thoracic spine and lumbar spine. Results noted above.
2. Lots of blood work - everything normal. This includes: Lyme, West Nile, Lupus, Rhum factor, Sed Rate, Muscle Enzymes (CPK) and probably some others I am forgetting. Neuro requested the last round of blood tests and they were normal.
Treatments
1. PT for neck and thoracic area. Therapist commented on hip weakness although saw mild strength improvement over 2 weeks.
Upcoming Tests
1. EMG and NCV? end of October
2. Sleep study and visit with Pulmonologist in 2 weeks
Other factors
1. Dealt with 2 deaths this year (mom and her husband).
2. Mother had 2 strokes in 2010. Died in June, 2013 with resp failure. Hospice nurse said ALS diagnosis was in her file. Somehow, with all that was going on with her husband who died in March, this got lost and not communicated to the family. Apparently diagnosed 2 1/2 years after having 2 major strokes that left her right side paralyzed, significant loss of speach and difficulty swallowing. I question the diagnosis but the fact remains...
Questions
1. If I were expereincing bulbar onset, would I have good days with my breathing and then some that were notably worse?
2. Is it normal for onset to take place in a location such as the hips? Would I have good days and bad or is it sustainably progressive?
3. Any reccommendations for questions to ask the Neuro or Pulmonologist during my next visits?
4. If I receive normal results from the EMG and NCV and my breathing is normal, I SHOULD assume it's not ALS right?
Lastly, I realize there is probably some anxiety / stress at least making things worse if not the cause. I have been under lots of stress this year but there are days where I feel optimistic, positive and energetic but a lot of the symptoms (especially the fascics in the calves) remain steadfast.
Again, thanks to you all for being here to answer these questions. I realize many of you are diagnosed and dealing with ALS. I wish you all the absolute best!
First, thanks in advance for taking the time to read / respond. I will try to be as short as possible but I do want to paint an accurate picture so please have patience with me.
I am a 39 year old male who has been active my entire life except for the past year and a half with increasing family / work commitments.
My only diagnosed conditions are
1. "moderate cervical stenosis @ C-3 & C-4.
2. Gerd
Symptoms
1. Weakness and pain in hips for nearly a year. I can still run (not a lot though) and walk though feel unsteady at times, especially in the moring.
2. Stiffness / soreness and mild cramping in hamstrings since March. There are a few occasions where I actually feel like the old me but even a little excercise makes the condition worse.
3. Fasciculations in calves since June. They are constant; sometimes worse than others. Same stiffness / soreness and mild cramping as noted with hamstrings.
4. Toe cramping that comes and goes. Occassional pain (feels like subtle cramp) in plantar area of foot.
5. Feeling of heaviness when breathing that varies in severity from day to day. Today, as i am typing this, I am not having it at all. Winded very easily.
6. Constant acid reflux. Been through several meds. On Nexium and probiotic now hoping for better reults.
7. Muscle cramping in thoracic area of back. Some days, pain is a 5/6 on a 10 scale.
Tests
1. MRI of head, cervical spine, thoracic spine and lumbar spine. Results noted above.
2. Lots of blood work - everything normal. This includes: Lyme, West Nile, Lupus, Rhum factor, Sed Rate, Muscle Enzymes (CPK) and probably some others I am forgetting. Neuro requested the last round of blood tests and they were normal.
Treatments
1. PT for neck and thoracic area. Therapist commented on hip weakness although saw mild strength improvement over 2 weeks.
Upcoming Tests
1. EMG and NCV? end of October
2. Sleep study and visit with Pulmonologist in 2 weeks
Other factors
1. Dealt with 2 deaths this year (mom and her husband).
2. Mother had 2 strokes in 2010. Died in June, 2013 with resp failure. Hospice nurse said ALS diagnosis was in her file. Somehow, with all that was going on with her husband who died in March, this got lost and not communicated to the family. Apparently diagnosed 2 1/2 years after having 2 major strokes that left her right side paralyzed, significant loss of speach and difficulty swallowing. I question the diagnosis but the fact remains...
Questions
1. If I were expereincing bulbar onset, would I have good days with my breathing and then some that were notably worse?
2. Is it normal for onset to take place in a location such as the hips? Would I have good days and bad or is it sustainably progressive?
3. Any reccommendations for questions to ask the Neuro or Pulmonologist during my next visits?
4. If I receive normal results from the EMG and NCV and my breathing is normal, I SHOULD assume it's not ALS right?
Lastly, I realize there is probably some anxiety / stress at least making things worse if not the cause. I have been under lots of stress this year but there are days where I feel optimistic, positive and energetic but a lot of the symptoms (especially the fascics in the calves) remain steadfast.
Again, thanks to you all for being here to answer these questions. I realize many of you are diagnosed and dealing with ALS. I wish you all the absolute best!