G
Guest
Guest
Could really use your insight and direction...
Knowing the ravages of ALS, I would much rather be diagnosed with Myasthenia Gravis any day (even though that DX is terrible but it is at least somewhat manageable compared to ALS). I had to go into the ER today with difficulty breathing and swallowing (I mean this is the worst it has ever been and I walk on water to avoid the ER). The neuro who tended to me believes I have symptoms of motor neuron damage based on my global muscle weakness, bulbar symptoms, and widespread 24/7 muscle fasciculations (normal MRI, EMG, NCV, abnormal neuro testing). This has been going on for two years, but just flared bad 3 weeks ago. Do people with ALS even have flares and then recover...not recover as in "wow what a miracle you are healed!" No, by recover I mean do they return to where they were at before the flare or even just a bit worse before the flare? Or is it 100%, one you lose that negative ground, flare or not, there is not getting it back?
Also, do ALS patients have hours of the day where symptoms are not as bad? FOr me, the late evening hours (7-9 typically), I show some improvement. But mornings, noon, early afternoon... always a huge bear for me. I have been so week I have been on bedrest over a month by now.
To help you get a better understanding of what has been going on with me, here is a pretty detailed medical history.
REALLY APPRECIATE YOUR REMARKS AND THOUGHTS. it may be 6 weeks before I get in to see the neuro, and I don't know if I can make it that long without being intubated (if things keep progressing as they have).
Medical History:
Profound muscle weakness – started in my legs and hands almost two years ago (August of 2009), it has spread to my entire body by now. Early on, I would have difficulty clearing the steps with my feet/shoe tips walking up stairs and trip incessantly – additionally, I began dropping things, even when I tried not to (I initially thought nothing of it until I realized something was unmistakably wrong as I began to drop things all the time). The muscle weakness quickly spread to my legs, then to my upper torso, neck, everywhere; there was a point where I could barely hold up my head or get out of bed on my own in the morning. Then I noticed something strange looking in the mirror during the course of this flare – my right eye was halfway shut and I could not get it to stay up. This flare happened in August of 2009 but the months preceding this flare there were subtle symptoms in spades that would come and go. As the months went by, my body seemed to adapt to these limitations, but I never recovered (although I did experience a brief period of a few weeks where my symptoms, while not gone, were minimized to a degree). The muscle weakness greatly affects my ability to chew/swallow (especially fluids), my ability to breath, my ability to speak (my voice has become very weak, monotonous, shaky). My facial expressions have become limited (lips and cheeks sometimes quiver when trying to smile). Walking has become increasingly difficult, most especially up/down stairs. Bending over has become extremely difficult, as has lifting. Any movement requires great effort. Resulting loss of muscle mass. Profound fatigue/exhaustion (chronic). I have been to the ER twice with difficulty breathing and swallowing (and dismissed without a diagnosis other than “it’s probably related to your autoimmune illness”).
Muscle twitches – incessant muscle twitching (fasciculations), all over, ranging from very strong to moderately weak. Thumbs and forefingers twitch as well.
Difficulty breathing – made inordinately worse lying down flat on my back. I can breathe easiest lying down on my side; the moment I switch over to my back, breathing becomes very labored and I cannot exhale or inhale fully. My diaphragm feels completely spent, as do all of my abdominal muscles. Have been close on two occasions to having my wife take me to the ER. In both instances, I was insistent on waiting for things to improve (which they did after approximately 30 minutes).
Difficulty Swallowing – has gotten dramatically worse in the past two weeks (liquids are the hardest to swallow, pills are a close second as my throat has a tendency to close on them – I have never had a problem with this until just the past three months).oss of
loss of dexterity/coordination (this is particularly problematic as my profession, not to mention everyday living, requires the constant use of my hands).
Severe headaches that don’t go away (feeling of tremendous pressure inside my head) – I have had these headaches for almost 3 months now. Ibuprofen, which normally works on normal headaches, seems to have little or no effect on these headaches. Possibly CO2 headaches from incomplete exhalation?
Involuntary muscle jerks (myoclonus)
Severe muscle cramps (chronic and severe at times)
Feeling of electricity/vibration in my limbs – a few times throughout the day (most especially legs/feet, hands; arms more increasingly as of late as my arm and hand strength have greatly been reduced).
Medical history:
• Autoimmune condition (Post Viral CFIDS - chronic fatigue immuno dysfunction syndrome), diagnosed in April of 2007 (several years after initial onset which was in August of 2002, after an acute viral infection)
• Hypothyroidism
• Allodynia/central sensitization (upper torso, in consequence of CFIDS, being treated by Dr. Irving of Swedish, Seattle)
• Numerous tender points throughout body (mostly around connective tissue, some muscle tissue – these are not the tender points associated with fibromyalgia)
_____________________________________________________________________________________
Things that have been partially but not completely ruled out thus far…
• MS – 3 clean MRIs including a 3T MRI (care of Dr. James Bowen of Swedish Medical, Seattle)
• Myasthenia Gravis (only partially ruled out through negative anti-AChR antibody testing, negative EMG, negative NCV). Would like to have a Tensilon test administered to definitively rule MG out (20-30% of all MG patients are seronegative and pass the aforementioned tests, MG is only detectable in these cases with a Tensilon test).
• CIDP (negative EMG and NCV)
• MMN (negative EMG and NCV)
• Sarcoidosis (normal lung x-ray)
• Borreliosis (ELISA was negative, still need to run Western Blot as ELISA has been proven to be unreliable, quite often missing a large percentage of positive Borrelia cases)
Additional related info:
• Normal chest X-ray
• Elevated liver enzymes (chronically elevated since acute viral infection that caused CFIDS)
• Elevated myoglobin levels in latest blood test
• Chronically elevated white blood cell count
Tests that still have yet to be performed…
Tensilon Test – My PHP would like this test to be performed to rule out seronegative myasthenia gravis
Spinal tap and analysis of CSF
Muscle tissue biopsy (to rule out Mitochondrial Myopathy)
Nerve tissue biopsy
TH1/TH2 assay
Heavy metal toxicity testing
Genetic testing (to rule out Kennedy’s disease)
Knowing the ravages of ALS, I would much rather be diagnosed with Myasthenia Gravis any day (even though that DX is terrible but it is at least somewhat manageable compared to ALS). I had to go into the ER today with difficulty breathing and swallowing (I mean this is the worst it has ever been and I walk on water to avoid the ER). The neuro who tended to me believes I have symptoms of motor neuron damage based on my global muscle weakness, bulbar symptoms, and widespread 24/7 muscle fasciculations (normal MRI, EMG, NCV, abnormal neuro testing). This has been going on for two years, but just flared bad 3 weeks ago. Do people with ALS even have flares and then recover...not recover as in "wow what a miracle you are healed!" No, by recover I mean do they return to where they were at before the flare or even just a bit worse before the flare? Or is it 100%, one you lose that negative ground, flare or not, there is not getting it back?
Also, do ALS patients have hours of the day where symptoms are not as bad? FOr me, the late evening hours (7-9 typically), I show some improvement. But mornings, noon, early afternoon... always a huge bear for me. I have been so week I have been on bedrest over a month by now.
To help you get a better understanding of what has been going on with me, here is a pretty detailed medical history.
REALLY APPRECIATE YOUR REMARKS AND THOUGHTS. it may be 6 weeks before I get in to see the neuro, and I don't know if I can make it that long without being intubated (if things keep progressing as they have).
Medical History:
Profound muscle weakness – started in my legs and hands almost two years ago (August of 2009), it has spread to my entire body by now. Early on, I would have difficulty clearing the steps with my feet/shoe tips walking up stairs and trip incessantly – additionally, I began dropping things, even when I tried not to (I initially thought nothing of it until I realized something was unmistakably wrong as I began to drop things all the time). The muscle weakness quickly spread to my legs, then to my upper torso, neck, everywhere; there was a point where I could barely hold up my head or get out of bed on my own in the morning. Then I noticed something strange looking in the mirror during the course of this flare – my right eye was halfway shut and I could not get it to stay up. This flare happened in August of 2009 but the months preceding this flare there were subtle symptoms in spades that would come and go. As the months went by, my body seemed to adapt to these limitations, but I never recovered (although I did experience a brief period of a few weeks where my symptoms, while not gone, were minimized to a degree). The muscle weakness greatly affects my ability to chew/swallow (especially fluids), my ability to breath, my ability to speak (my voice has become very weak, monotonous, shaky). My facial expressions have become limited (lips and cheeks sometimes quiver when trying to smile). Walking has become increasingly difficult, most especially up/down stairs. Bending over has become extremely difficult, as has lifting. Any movement requires great effort. Resulting loss of muscle mass. Profound fatigue/exhaustion (chronic). I have been to the ER twice with difficulty breathing and swallowing (and dismissed without a diagnosis other than “it’s probably related to your autoimmune illness”).
Muscle twitches – incessant muscle twitching (fasciculations), all over, ranging from very strong to moderately weak. Thumbs and forefingers twitch as well.
Difficulty breathing – made inordinately worse lying down flat on my back. I can breathe easiest lying down on my side; the moment I switch over to my back, breathing becomes very labored and I cannot exhale or inhale fully. My diaphragm feels completely spent, as do all of my abdominal muscles. Have been close on two occasions to having my wife take me to the ER. In both instances, I was insistent on waiting for things to improve (which they did after approximately 30 minutes).
Difficulty Swallowing – has gotten dramatically worse in the past two weeks (liquids are the hardest to swallow, pills are a close second as my throat has a tendency to close on them – I have never had a problem with this until just the past three months).oss of
loss of dexterity/coordination (this is particularly problematic as my profession, not to mention everyday living, requires the constant use of my hands).
Severe headaches that don’t go away (feeling of tremendous pressure inside my head) – I have had these headaches for almost 3 months now. Ibuprofen, which normally works on normal headaches, seems to have little or no effect on these headaches. Possibly CO2 headaches from incomplete exhalation?
Involuntary muscle jerks (myoclonus)
Severe muscle cramps (chronic and severe at times)
Feeling of electricity/vibration in my limbs – a few times throughout the day (most especially legs/feet, hands; arms more increasingly as of late as my arm and hand strength have greatly been reduced).
Medical history:
• Autoimmune condition (Post Viral CFIDS - chronic fatigue immuno dysfunction syndrome), diagnosed in April of 2007 (several years after initial onset which was in August of 2002, after an acute viral infection)
• Hypothyroidism
• Allodynia/central sensitization (upper torso, in consequence of CFIDS, being treated by Dr. Irving of Swedish, Seattle)
• Numerous tender points throughout body (mostly around connective tissue, some muscle tissue – these are not the tender points associated with fibromyalgia)
_____________________________________________________________________________________
Things that have been partially but not completely ruled out thus far…
• MS – 3 clean MRIs including a 3T MRI (care of Dr. James Bowen of Swedish Medical, Seattle)
• Myasthenia Gravis (only partially ruled out through negative anti-AChR antibody testing, negative EMG, negative NCV). Would like to have a Tensilon test administered to definitively rule MG out (20-30% of all MG patients are seronegative and pass the aforementioned tests, MG is only detectable in these cases with a Tensilon test).
• CIDP (negative EMG and NCV)
• MMN (negative EMG and NCV)
• Sarcoidosis (normal lung x-ray)
• Borreliosis (ELISA was negative, still need to run Western Blot as ELISA has been proven to be unreliable, quite often missing a large percentage of positive Borrelia cases)
Additional related info:
• Normal chest X-ray
• Elevated liver enzymes (chronically elevated since acute viral infection that caused CFIDS)
• Elevated myoglobin levels in latest blood test
• Chronically elevated white blood cell count
Tests that still have yet to be performed…
Tensilon Test – My PHP would like this test to be performed to rule out seronegative myasthenia gravis
Spinal tap and analysis of CSF
Muscle tissue biopsy (to rule out Mitochondrial Myopathy)
Nerve tissue biopsy
TH1/TH2 assay
Heavy metal toxicity testing
Genetic testing (to rule out Kennedy’s disease)
