StillSteve
Active member
- Joined
- Apr 28, 2010
- Messages
- 41
- Reason
- PALS
- Diagnosis
- 02/2011
- Country
- US
- State
- MN
- City
- Twin Cities
Once again, I find myself unable to briefly summarize my situation. Feel free to skip to my questions at the end of this long post. You've all probably read hundreds of desperate histories like mine.
I do not have a formal diagnosis, but two neurologists have now told me that they suspect that I have ALS. The second of these two doctors, a very well-qualified specialist in neuro-muscular diseases, told me that "the constellation of symptoms you are presenting are highly suggestive of ALS." He held out some hope for monomelic amyotrophy (but said my widespread fasics are a counterindication), and discounted multifocal motor neuropathy (the diffuse involvement in my left arm does not look to him like MMN). He did order another round of blood tests (including for Lyme antibodies), a 24-hour urinalysis to look for heavy metals, and another EMG (my third, which I expect will be my most comprehensive).
He told me that my progression seems to be slow. My first symptom, cramping of the left hand, occurred about a year ago (it's fuzzy). I definitely had weakness in my left hand (noticed I couldn't use it to trim fingernails) about eight months ago. My GP noticed visible atrophy of the right arm (upper and lower) and hand during a routine physical four months ago.
It wasn't until my GP referred me for an EMG after that physical that I noticed the fasiculations. Not sure how long prior to that they may have gone undetected, though I can say that they were pronounced and fairly widespread at that time, and certainly couldn't have been occurring at that level for long at all without my taking notice of them. These fascics continue to occur everywhere from my shoulders to my thighs. Rarely do I notice them below my knees (but not never). Much more consistent and pronounced in my left arm than anywhere else.
The weakness in my left hand is significant, but I am still using it (for example) to touch-type fairly effectively. I play softball and am able to catch the ball with my left hand, but I can't really squeeze the glove shut. I'm still playing volleyball, but I never was very good with my left arm, and I'm certainly not getting any better with it.
I'm tired a lot. Hard to know how much of this is due to my neuro-muscular condition (whatever it is), and how much is due to stress and (most likely) mild depression.
Until last Thursday's appointment, I believed that I was not showing any upper motor neuron signs. However, the doctor finds (somewhat) brisk reflexes in my left foot, knee, and (especially) wrist. This is complicated by the fact that I was diagnosed with Adie's syndrome in 2007. A feature of this is the absence of these reflexes. My doctor read in the report of the neuro-ophthamologist in 2007 that "reflexes absent from all seven locations tested." During Thursday's testing, I showed no reflexes on my right side, but some (fairly brisk, I guess) on my left side. The difference was striking. The bottom line is that my neuro does believe I'm showing upper motor neuron signs. (In my only other post to this site "Is this PMA?" I was confident that I was not showing upper motor neuron signs.)
Other info includes: no Babinski's sign, no clonus of which I am aware, no swallowing or speech difficulties, no fasics or atrophy of tongue (according to doc's visual inspection), no problems with balance, and (measured) normal lung capacity. Two EMGs have not detected anything "significant" (doc's word) in other limbs, though these were far from comprehensive anywhere other than in my left arm. One fascic was detected in my back during second exam (both neuros have seen fascics visually in my right arm during visits). No objective atrophy or weakness found outside of my left arm, but I have felt for some time that my left leg is not right. I feel a "deadness" in it almost all of the time.
I have some "pins and needles" sensations in both feet, especially my left. These are worst after a workout (I occasionally use an elliptical machine in an attempt to get some aerobic exercise; I've gained about eight pounds in the past few months). In addition to my lack of exercise, I've been eating more than I should, and I drink a protein drink every day for breakfast.
The neuro told me that (if this is ALS) my progression has been "slow." The ALS clinic coordinator/nurse told me and my wife that the good news is that my progression has been slow and that in most cases ALS tends to stay on the same trajectory. Slow onset=slow course of disease. She then told us of three or more patients they are seeing who have lived more than 20 years with the disease. One, diagnosed for 34 years, is "still moving," she said.
I am 49 years old, and other than this (apparent) ALS, am in generally good health.
Three questions:
How true is it that a "slow onset/progression" tends to stay that way? Is this consistent, or just a hopeful generalization?
Does my progression (as I've outlined above) really seem slow, or just somewhat on the slow side of things, but not very unusual?
Is there any consensus on life expectancy? This site (in the "Facts About ALS and MND" article) claims that "90% of patients die within 3-5 years of symptoms." This is the least hopeful timeline I've seen anywhere. The "Facts You Should Know About ALS" article on the ALS Association website claims that "about twenty percent of people with ALS live five years or more, up to ten percent will survive more than ten years, and five percent will live 20 years." These two sites don't seem to agree. I read statements in (many) other places such as "usually ranges from about 3 to 5 years after diagnosis." "After symptoms" and "after diagnosis" are two very different things. Where's the truth?
Thanks for reading and for any info you can provide,
B
I do not have a formal diagnosis, but two neurologists have now told me that they suspect that I have ALS. The second of these two doctors, a very well-qualified specialist in neuro-muscular diseases, told me that "the constellation of symptoms you are presenting are highly suggestive of ALS." He held out some hope for monomelic amyotrophy (but said my widespread fasics are a counterindication), and discounted multifocal motor neuropathy (the diffuse involvement in my left arm does not look to him like MMN). He did order another round of blood tests (including for Lyme antibodies), a 24-hour urinalysis to look for heavy metals, and another EMG (my third, which I expect will be my most comprehensive).
He told me that my progression seems to be slow. My first symptom, cramping of the left hand, occurred about a year ago (it's fuzzy). I definitely had weakness in my left hand (noticed I couldn't use it to trim fingernails) about eight months ago. My GP noticed visible atrophy of the right arm (upper and lower) and hand during a routine physical four months ago.
It wasn't until my GP referred me for an EMG after that physical that I noticed the fasiculations. Not sure how long prior to that they may have gone undetected, though I can say that they were pronounced and fairly widespread at that time, and certainly couldn't have been occurring at that level for long at all without my taking notice of them. These fascics continue to occur everywhere from my shoulders to my thighs. Rarely do I notice them below my knees (but not never). Much more consistent and pronounced in my left arm than anywhere else.
The weakness in my left hand is significant, but I am still using it (for example) to touch-type fairly effectively. I play softball and am able to catch the ball with my left hand, but I can't really squeeze the glove shut. I'm still playing volleyball, but I never was very good with my left arm, and I'm certainly not getting any better with it.
I'm tired a lot. Hard to know how much of this is due to my neuro-muscular condition (whatever it is), and how much is due to stress and (most likely) mild depression.
Until last Thursday's appointment, I believed that I was not showing any upper motor neuron signs. However, the doctor finds (somewhat) brisk reflexes in my left foot, knee, and (especially) wrist. This is complicated by the fact that I was diagnosed with Adie's syndrome in 2007. A feature of this is the absence of these reflexes. My doctor read in the report of the neuro-ophthamologist in 2007 that "reflexes absent from all seven locations tested." During Thursday's testing, I showed no reflexes on my right side, but some (fairly brisk, I guess) on my left side. The difference was striking. The bottom line is that my neuro does believe I'm showing upper motor neuron signs. (In my only other post to this site "Is this PMA?" I was confident that I was not showing upper motor neuron signs.)
Other info includes: no Babinski's sign, no clonus of which I am aware, no swallowing or speech difficulties, no fasics or atrophy of tongue (according to doc's visual inspection), no problems with balance, and (measured) normal lung capacity. Two EMGs have not detected anything "significant" (doc's word) in other limbs, though these were far from comprehensive anywhere other than in my left arm. One fascic was detected in my back during second exam (both neuros have seen fascics visually in my right arm during visits). No objective atrophy or weakness found outside of my left arm, but I have felt for some time that my left leg is not right. I feel a "deadness" in it almost all of the time.
I have some "pins and needles" sensations in both feet, especially my left. These are worst after a workout (I occasionally use an elliptical machine in an attempt to get some aerobic exercise; I've gained about eight pounds in the past few months). In addition to my lack of exercise, I've been eating more than I should, and I drink a protein drink every day for breakfast.
The neuro told me that (if this is ALS) my progression has been "slow." The ALS clinic coordinator/nurse told me and my wife that the good news is that my progression has been slow and that in most cases ALS tends to stay on the same trajectory. Slow onset=slow course of disease. She then told us of three or more patients they are seeing who have lived more than 20 years with the disease. One, diagnosed for 34 years, is "still moving," she said.
I am 49 years old, and other than this (apparent) ALS, am in generally good health.
Three questions:
How true is it that a "slow onset/progression" tends to stay that way? Is this consistent, or just a hopeful generalization?
Does my progression (as I've outlined above) really seem slow, or just somewhat on the slow side of things, but not very unusual?
Is there any consensus on life expectancy? This site (in the "Facts About ALS and MND" article) claims that "90% of patients die within 3-5 years of symptoms." This is the least hopeful timeline I've seen anywhere. The "Facts You Should Know About ALS" article on the ALS Association website claims that "about twenty percent of people with ALS live five years or more, up to ten percent will survive more than ten years, and five percent will live 20 years." These two sites don't seem to agree. I read statements in (many) other places such as "usually ranges from about 3 to 5 years after diagnosis." "After symptoms" and "after diagnosis" are two very different things. Where's the truth?
Thanks for reading and for any info you can provide,
B