Molin
New member
- Joined
- Sep 27, 2023
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- San Diego
I (36M) cannot thank this community enough for the time and effort that they take to help people like me as we await additional test results and struggle to get appointments with our health care providers. I have read the "read before posting" and will try my best to adhere to the principles therein. That was a very helpful read, and kept me from posting for many weeks, but things are not getting better. Apologies for the length of this post, but I wanted to be complete will all history and symptoms.
My symptoms began about 2 months ago as bi-lateral calf fasciculations, which are ongoing, but were my only symptom for about a week (good news, I think that these were first). Following that first week things started getting a bit worse and my legs - mostly thighs and quads - became very sore / tight with regular feelings of dull ache. The sensation was/is like the beginning of a muscle cramp that never really takes hold. It is not painful, per se, but maybe like a 1-2/10 if I had to ascribe a pain score - very tolerable.
I saw my PCP after a few weeks of this persisting, who ran blood tests and did a clinical weakness exam - all of these tests were normal. I don't believe that my legs have gotten markedly weaker, but they also do not seem to be improving. I have not had any total loss of function. FWIW I am athletic and started out strong, so the tests that they gave on weakness seemed very easy, notwithstanding that I am far far weaker than I was before this all started in all of my extremities (excluding perhaps my left arm). I measure this by a 30 minute walk I take with my daughter, which for many days I was unable to complete (or even start in a couple of cases) but that some days I can complete with significant effort. My fasciculations are still primarily in my legs, but have been moving all over, with other hot spots being in my right shoulder, trunk, back and thighs/quads.
Fast forward a could of weeks (about 3-4 weeks ago) I started having what I can only describe as a "dead arm" where my right shoulder feels very heavy and tired. Further I wake up nearly every night with my right arm and hand completely numb. I can work feeling back into my hand, but my shoulder is bad every day. I can still move my shoulder and do most things, but it fatigues very quickly and feels like I have thrown a ball 500 times the day before - which I obviously have not. At this rate of decline, I feel like I will lose the ability to use my right shoulder in the relative near term. I also have more pronounced sensory issues at night (and the fasciculations fire up to a new level all over) and some nerve pain / burning stabbing sensations) in my jaw, lower extremities and hands.
After communicating my new symptoms, I was referred to a neurologist who also did a clinical exam (determined that I do not have clinical weakness), but who ordered an EMG and MRI. The EMG and MRI summaries are below my question for references. I am having a very difficult time reaching my neurologist or any other health care professional to walk me through the MRI and EMG findings, which were summarily posted to MyChart, so was hoping to glean a bit from this community.
My real goal in posting is trying to better understand (1) what early ALS weakness (i.e. before clinical weakness is found) "felt like", for those that experienced it and whether my experiences parallel those with PALS in this community and (2) whether there are any tips that a young person can use to get attention from the doctors, who seem very dismissive and wanting to take a "wait and see" / do PT approach. I trust my doctors, but also know that time is of the essence with ALS and that an early diagnosis for ALS (or MMN / GBS or other neuro issues) can be very meaningful. Thank you to all of you for your time in reading and responding. Going through this and reading the stories and strength of those PALS and their caregivers has committed me to making donations to ALS charities that are well regarded in the community. If you recommend one in your answer / reply, I will happily make a donation in your name or the name of a loved one.
MRI/EMG TEST SUMMARIES.
EMG:
"Conclusion: This is an abnormal study. There was chronic reinnervation see in the right biceps femoris (long head) along with rare fasciculations in the gastrocnemius which can be seen in a mild right S1 radiculopathy with ongoing denervation. Consider MRI Lumbosacral spine for further evaluation. In the meantime PT for strengthening and stretching legs and core. At this time, there is no clear electrodiagnostic evidence to suggest motor neuron disease, right C5-8 radiculopathy, benign cramp fasciculations, or entrapment neuropathy of the right median or ulnar or peroneal nerve."
****** I am trying to take comfort in the statement "here is no clear electrodiagnostic evidence", but I am a lawyer and think I may be reading into the fact that "no clear evidence" is very different than "no evidence". *****
MRI:
"IMPRESSION:
Severe multilevel degenerative disc disease. The most abnormal intervertebral disc spaces the L4-5 intervertebral disc space. L3-L4: Moderate bilateral foraminal stenosis and mild central stenosis. L4-L5: A large broad-based disc protrusion centrally and to the right measuring approximately 10 mm x 6 mm. There is marked effacement of the thecal sac and severe central stenosis. Severe bilateral foraminal stenosis is noted as well. L5-S1: A broad-based disc osteophyte extending to the foramina bilaterally. Severe near complete left foraminal stenosis is noted. Severe right foraminal stenosis is identified mild central stenosis is noted although there is contact of the traversing S1 roots bilaterally."
*****I think the MRI could explain some of the leg issues and fasciculations in my lower extremities, but not my arm stuff.****
With admiration and thanks,
Marshall
My symptoms began about 2 months ago as bi-lateral calf fasciculations, which are ongoing, but were my only symptom for about a week (good news, I think that these were first). Following that first week things started getting a bit worse and my legs - mostly thighs and quads - became very sore / tight with regular feelings of dull ache. The sensation was/is like the beginning of a muscle cramp that never really takes hold. It is not painful, per se, but maybe like a 1-2/10 if I had to ascribe a pain score - very tolerable.
I saw my PCP after a few weeks of this persisting, who ran blood tests and did a clinical weakness exam - all of these tests were normal. I don't believe that my legs have gotten markedly weaker, but they also do not seem to be improving. I have not had any total loss of function. FWIW I am athletic and started out strong, so the tests that they gave on weakness seemed very easy, notwithstanding that I am far far weaker than I was before this all started in all of my extremities (excluding perhaps my left arm). I measure this by a 30 minute walk I take with my daughter, which for many days I was unable to complete (or even start in a couple of cases) but that some days I can complete with significant effort. My fasciculations are still primarily in my legs, but have been moving all over, with other hot spots being in my right shoulder, trunk, back and thighs/quads.
Fast forward a could of weeks (about 3-4 weeks ago) I started having what I can only describe as a "dead arm" where my right shoulder feels very heavy and tired. Further I wake up nearly every night with my right arm and hand completely numb. I can work feeling back into my hand, but my shoulder is bad every day. I can still move my shoulder and do most things, but it fatigues very quickly and feels like I have thrown a ball 500 times the day before - which I obviously have not. At this rate of decline, I feel like I will lose the ability to use my right shoulder in the relative near term. I also have more pronounced sensory issues at night (and the fasciculations fire up to a new level all over) and some nerve pain / burning stabbing sensations) in my jaw, lower extremities and hands.
After communicating my new symptoms, I was referred to a neurologist who also did a clinical exam (determined that I do not have clinical weakness), but who ordered an EMG and MRI. The EMG and MRI summaries are below my question for references. I am having a very difficult time reaching my neurologist or any other health care professional to walk me through the MRI and EMG findings, which were summarily posted to MyChart, so was hoping to glean a bit from this community.
My real goal in posting is trying to better understand (1) what early ALS weakness (i.e. before clinical weakness is found) "felt like", for those that experienced it and whether my experiences parallel those with PALS in this community and (2) whether there are any tips that a young person can use to get attention from the doctors, who seem very dismissive and wanting to take a "wait and see" / do PT approach. I trust my doctors, but also know that time is of the essence with ALS and that an early diagnosis for ALS (or MMN / GBS or other neuro issues) can be very meaningful. Thank you to all of you for your time in reading and responding. Going through this and reading the stories and strength of those PALS and their caregivers has committed me to making donations to ALS charities that are well regarded in the community. If you recommend one in your answer / reply, I will happily make a donation in your name or the name of a loved one.
MRI/EMG TEST SUMMARIES.
EMG:
"Conclusion: This is an abnormal study. There was chronic reinnervation see in the right biceps femoris (long head) along with rare fasciculations in the gastrocnemius which can be seen in a mild right S1 radiculopathy with ongoing denervation. Consider MRI Lumbosacral spine for further evaluation. In the meantime PT for strengthening and stretching legs and core. At this time, there is no clear electrodiagnostic evidence to suggest motor neuron disease, right C5-8 radiculopathy, benign cramp fasciculations, or entrapment neuropathy of the right median or ulnar or peroneal nerve."
****** I am trying to take comfort in the statement "here is no clear electrodiagnostic evidence", but I am a lawyer and think I may be reading into the fact that "no clear evidence" is very different than "no evidence". *****
MRI:
"IMPRESSION:
Severe multilevel degenerative disc disease. The most abnormal intervertebral disc spaces the L4-5 intervertebral disc space. L3-L4: Moderate bilateral foraminal stenosis and mild central stenosis. L4-L5: A large broad-based disc protrusion centrally and to the right measuring approximately 10 mm x 6 mm. There is marked effacement of the thecal sac and severe central stenosis. Severe bilateral foraminal stenosis is noted as well. L5-S1: A broad-based disc osteophyte extending to the foramina bilaterally. Severe near complete left foraminal stenosis is noted. Severe right foraminal stenosis is identified mild central stenosis is noted although there is contact of the traversing S1 roots bilaterally."
*****I think the MRI could explain some of the leg issues and fasciculations in my lower extremities, but not my arm stuff.****
With admiration and thanks,
Marshall
