jcp1776
New member
- Joined
- Aug 16, 2022
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Philadelphia
Hi all,
I have been spending a great deal worried about my symptoms and other than going to neurologists, I thought I would try here. I have read the “Read this first” and it has helped a ton, but I still find myself here so apologies. I will describe my symptoms/tests/etc chronologically and I apologize in advance for all of the content. Thanks in advance to those who read it and offer advice. It means a lot.
A little background: I am 34 years old, very active, and in the medical profession in a high stress job. Prior to the start of my symptoms I spent almost a year doing heavy weight lifting. I also struggle from anxiety and OCD and admittedly have obsessions about my health. That being said, I have had actual diagnoses and real symptoms. I am concerned about ALS and MND but also not oblivious to my other mental health issues.
~April 2021: I noticed a numb/”heavy”/”dead feeling'' only to the lateral aspect of my left foot. This persisted for a few months. Occasionally I would have some calf pain but it is difficult to remember as pain was definitely not a major symptom and I was not very limited. I did not really think anything of it other than I maybe irritated something working out too much.
~July 2021: The numb/”dead” sensation at some point resolved but around mid July 2021 I noticed I was slightly but noticeably weak in the left leg with plantar flexion and push off. I noticed this with pushing off running up stairs or carrying boxes while moving into a new house. I was still able to walk around but over the next 2-3 months I experienced a gradual loss in balance (I felt like the leg was dead) and felt like I was using more and more of my “good” right leg. Over the next few months I gradually stopped working out with my legs because it felt like I was straining my calf. I remember while walking it felt like I was pulling/falling off to the left side but had no falls and nothing that anyone would notice, just felt off centered.
~ November 2021: I finally went to see a physical therapist who noticed asymmetry with function on that left leg and slight atrophy of the L calf which I hadn’t noticed myself previously because I never thought to check. This prompted further medical visits. My best friend is an orthopedic surgeon who ordered an MRI of my lumbar and thoracic spine which showed: “1. Mild degenerative changes without significant spinal canal or neural foraminal stenosis within the thoracic or lumbar spine.”
Also in November 2021 I made a neurologist appointment. He was older guy who I felt was “on his way out” and sort of brushed me off. I did have a normal strength and neuro exam, but he ordered a CK and EMG when I told him I was concerned about ALS. CK was normal and the EMG showed chronic denervation to S1 innervated muscles consistent with S1 radiculopathy. I attached the impression below and the report to the post. I did have some denervation to an L5 muscle (tibialis anterior) which was unexplainable. There is a comment about motor neuron disease which definitely made me concerned/obsessive. Both the neurologist who saw me in the office and the one who did the EMG (they are affiliated) said it was consistent with S1 radiculopathy and said “I’m good.” The impression was: “1. Mild chronic denervation of three left S1-innervated muscles as can be seen most commonly with a left S1 radiculopathy. A motor neuron disorder can also cause these findings but the lack of abnormal spontaneous activity argues against an active or ongoing process.
2. Mild chronic denervation of one distal L5-innervated muscle of uncertain clinical significance.”
November - Dec 2021: I began getting other symptoms. I started noticing my typing at the keyboard and folding clothes was discoordinated. This seems to be localized to the fingers innervated by the ulnar region (ring and pinky finger). . The symptoms were intermittent and eventually improved by January/February once I stopped resting my elbow and made some ergonomic changes.
Around the same time I also noticed an abnormal sensation to the left side of my face in the cheek/mouth/and around the eye. Sometimes I would wake up and feel like that side of my face was “stuck” and I had to “shake it out.” There was no weakness such as an obvious bell palsy. This was infrequent.
Also around the same time after working out my upper body (probably too difficult) I noticed pain to my posterior left shoulder and after that day, for about a month I noticed a vague heavy sensation with lifting at the shoulder. I also would get reproducible burning pain of the left lateral forearm after a workout. Finally I noticed my left arm wasn’t as strong as my right arm with exercises at the gym such as biceps and triceps. This prompted me to schedule another appointment with a neurologist but at a different institution nearby because it was easier to get in and partly because I did not like the original neurologist. With time, all of the above resolved and I regained strength in my left arm, the burning sensation went away, and the shoulder sensation went away. At this point I had noticed an improvement in my left leg symptoms and started running again in physical therapy and my balance improved.
January 2021: It was at this point that once my left arm improved, my right arm seemed to be weaker than my left arm, especially with bicep flexion and tricep extension and shoulder motion. It was also this time that I noticed my R pectoral muscle was smaller than my L pectoral muscle (this was confirmed by a neurologist, see next sentence). My girlfriend didnt notice this difference until I pointed it out. At my scheduled new neurologist appointment, he noticed the difference in my pectoral muscles when I mentioned it and said it was slight. He also noted my exam was otherwise normal. No clinical weakness. He said he was “not thinking ALS but wanted to look for other things.” He reviewed the EMG on my left leg and spinal MRI and ordered a CT brain and cervical spine, as well as EMG of bilateral upper extremities and cervical spine.
The MRI impression: The MRI brain was read as normal. C4-C5: There are small central and right foraminal protrusions. There is no
significant central stenosis or neural foraminal narrowing.
C5-C6: There is a small central disc protrusion effacing the ventral thecal sac
mildly narrowing the AP diameter of the canal approaching/abutting the ventral
cord without impingement. There is no neural foraminal narrowing.
C6-C7: There is a small central disc protrusion. There is no central stenosis
or neural foraminal narrowing.
Small disc protrusions at C4-5 through C6-7 resulting in mild narrowing of the AP diameter of the canal at C5-6 as above.
The same neurologist performed the EMG which he said showed only bilateral cubital tunnel syndrome which fit with my intermittent hand symptoms and he also said my “clinical exam, testing, and history were not compatible with motor neuron disease.” EMS report is included in this post.
May 2022: By May I would classify my left leg as 100%. At the start of physical therapy in Nov 2021 I could barely run 10 mins on a treadmill. By 5/1/22 I ran a 10 mi race at 7:51 mi/mi pace. At this point I began training for a marathon. Slightly before the 5/1/22 race and shortly after it, my right “good” leg started giving out. I started getting buttock pain, radiating pain down the leg, reproducible numb/paresthesia symptoms down the lateral aspect of the leg after working out. I had noticed my right thigh seems “smaller” than my left but I attributed that to different usage over the past months between my legs and long distance running etc. Ultimately I gave up running long distances by July 2022 based on all of this although I still remain active doing something active (weights, golf, gym, bike) at least 1-2 hours daily.
July-August 2022: At this point, my main symptoms that persist are my R leg seems to be “smaller” and slightly weaker than my previously injured leg. Still plenty of strength in that leg but just “feels different.” I also am not noticing any return of size to my R chest but am noticing some size return to my right arm and am noticing an improvement of strength. For context I can now do bicep curls with 40 pound dumbbells and bench press 95 pound dumbbells on each side. (I know this is all commented on in the “Read This” post and I apologize, I just am struggling putting this all together, especially with a new symptoms below).
A new symptom in July 2022/August 2022 is that I have noticed a slight facial droop to the L side of my face. It is not noticeable to others (my girlfriend states she doesn’t see it) but it has that heavy sensation to me and occasionally I feel that corner is a little wet (from saliva). Sometimes if im looking in the mirror I can pick up slight asymmetry but the facial exam is “normal.” It does seem intermittent but it is definitely present. I had a telehealth appt with the 2nd (current) neurologist who said my facial exam was normal and he ordered a bunch of lab tests and said I should come in 2 months for an in person visit but said he thinks generally “everything seems fine.” The lab tests were normal including CK, myoglobin, AcH bind Ab w/ Reflex, Aldolase, Muscle specific kinase antibody. We have a follow up appt in 2 months on 9/16/22 for an in person visit. My good friend is an ENT and he ordered and MRI of my facial nerves which was normal.
Generally speaking, my muscles never feel “fatigued.” I do experience muscle twitching sort of all over and not persistent in one place. They seem to happen in places that I’ve recently exerted “legs.” They are usually one or two twitches and stop. I don’t experience cramps or painful spasm. No shortness of breath, trouble swallowing or trouble talking.
For those who have read all of this, thank you.
I have been spending a great deal worried about my symptoms and other than going to neurologists, I thought I would try here. I have read the “Read this first” and it has helped a ton, but I still find myself here so apologies. I will describe my symptoms/tests/etc chronologically and I apologize in advance for all of the content. Thanks in advance to those who read it and offer advice. It means a lot.
A little background: I am 34 years old, very active, and in the medical profession in a high stress job. Prior to the start of my symptoms I spent almost a year doing heavy weight lifting. I also struggle from anxiety and OCD and admittedly have obsessions about my health. That being said, I have had actual diagnoses and real symptoms. I am concerned about ALS and MND but also not oblivious to my other mental health issues.
~April 2021: I noticed a numb/”heavy”/”dead feeling'' only to the lateral aspect of my left foot. This persisted for a few months. Occasionally I would have some calf pain but it is difficult to remember as pain was definitely not a major symptom and I was not very limited. I did not really think anything of it other than I maybe irritated something working out too much.
~July 2021: The numb/”dead” sensation at some point resolved but around mid July 2021 I noticed I was slightly but noticeably weak in the left leg with plantar flexion and push off. I noticed this with pushing off running up stairs or carrying boxes while moving into a new house. I was still able to walk around but over the next 2-3 months I experienced a gradual loss in balance (I felt like the leg was dead) and felt like I was using more and more of my “good” right leg. Over the next few months I gradually stopped working out with my legs because it felt like I was straining my calf. I remember while walking it felt like I was pulling/falling off to the left side but had no falls and nothing that anyone would notice, just felt off centered.
~ November 2021: I finally went to see a physical therapist who noticed asymmetry with function on that left leg and slight atrophy of the L calf which I hadn’t noticed myself previously because I never thought to check. This prompted further medical visits. My best friend is an orthopedic surgeon who ordered an MRI of my lumbar and thoracic spine which showed: “1. Mild degenerative changes without significant spinal canal or neural foraminal stenosis within the thoracic or lumbar spine.”
Also in November 2021 I made a neurologist appointment. He was older guy who I felt was “on his way out” and sort of brushed me off. I did have a normal strength and neuro exam, but he ordered a CK and EMG when I told him I was concerned about ALS. CK was normal and the EMG showed chronic denervation to S1 innervated muscles consistent with S1 radiculopathy. I attached the impression below and the report to the post. I did have some denervation to an L5 muscle (tibialis anterior) which was unexplainable. There is a comment about motor neuron disease which definitely made me concerned/obsessive. Both the neurologist who saw me in the office and the one who did the EMG (they are affiliated) said it was consistent with S1 radiculopathy and said “I’m good.” The impression was: “1. Mild chronic denervation of three left S1-innervated muscles as can be seen most commonly with a left S1 radiculopathy. A motor neuron disorder can also cause these findings but the lack of abnormal spontaneous activity argues against an active or ongoing process.
2. Mild chronic denervation of one distal L5-innervated muscle of uncertain clinical significance.”
November - Dec 2021: I began getting other symptoms. I started noticing my typing at the keyboard and folding clothes was discoordinated. This seems to be localized to the fingers innervated by the ulnar region (ring and pinky finger). . The symptoms were intermittent and eventually improved by January/February once I stopped resting my elbow and made some ergonomic changes.
Around the same time I also noticed an abnormal sensation to the left side of my face in the cheek/mouth/and around the eye. Sometimes I would wake up and feel like that side of my face was “stuck” and I had to “shake it out.” There was no weakness such as an obvious bell palsy. This was infrequent.
Also around the same time after working out my upper body (probably too difficult) I noticed pain to my posterior left shoulder and after that day, for about a month I noticed a vague heavy sensation with lifting at the shoulder. I also would get reproducible burning pain of the left lateral forearm after a workout. Finally I noticed my left arm wasn’t as strong as my right arm with exercises at the gym such as biceps and triceps. This prompted me to schedule another appointment with a neurologist but at a different institution nearby because it was easier to get in and partly because I did not like the original neurologist. With time, all of the above resolved and I regained strength in my left arm, the burning sensation went away, and the shoulder sensation went away. At this point I had noticed an improvement in my left leg symptoms and started running again in physical therapy and my balance improved.
January 2021: It was at this point that once my left arm improved, my right arm seemed to be weaker than my left arm, especially with bicep flexion and tricep extension and shoulder motion. It was also this time that I noticed my R pectoral muscle was smaller than my L pectoral muscle (this was confirmed by a neurologist, see next sentence). My girlfriend didnt notice this difference until I pointed it out. At my scheduled new neurologist appointment, he noticed the difference in my pectoral muscles when I mentioned it and said it was slight. He also noted my exam was otherwise normal. No clinical weakness. He said he was “not thinking ALS but wanted to look for other things.” He reviewed the EMG on my left leg and spinal MRI and ordered a CT brain and cervical spine, as well as EMG of bilateral upper extremities and cervical spine.
The MRI impression: The MRI brain was read as normal. C4-C5: There are small central and right foraminal protrusions. There is no
significant central stenosis or neural foraminal narrowing.
C5-C6: There is a small central disc protrusion effacing the ventral thecal sac
mildly narrowing the AP diameter of the canal approaching/abutting the ventral
cord without impingement. There is no neural foraminal narrowing.
C6-C7: There is a small central disc protrusion. There is no central stenosis
or neural foraminal narrowing.
Small disc protrusions at C4-5 through C6-7 resulting in mild narrowing of the AP diameter of the canal at C5-6 as above.
The same neurologist performed the EMG which he said showed only bilateral cubital tunnel syndrome which fit with my intermittent hand symptoms and he also said my “clinical exam, testing, and history were not compatible with motor neuron disease.” EMS report is included in this post.
May 2022: By May I would classify my left leg as 100%. At the start of physical therapy in Nov 2021 I could barely run 10 mins on a treadmill. By 5/1/22 I ran a 10 mi race at 7:51 mi/mi pace. At this point I began training for a marathon. Slightly before the 5/1/22 race and shortly after it, my right “good” leg started giving out. I started getting buttock pain, radiating pain down the leg, reproducible numb/paresthesia symptoms down the lateral aspect of the leg after working out. I had noticed my right thigh seems “smaller” than my left but I attributed that to different usage over the past months between my legs and long distance running etc. Ultimately I gave up running long distances by July 2022 based on all of this although I still remain active doing something active (weights, golf, gym, bike) at least 1-2 hours daily.
July-August 2022: At this point, my main symptoms that persist are my R leg seems to be “smaller” and slightly weaker than my previously injured leg. Still plenty of strength in that leg but just “feels different.” I also am not noticing any return of size to my R chest but am noticing some size return to my right arm and am noticing an improvement of strength. For context I can now do bicep curls with 40 pound dumbbells and bench press 95 pound dumbbells on each side. (I know this is all commented on in the “Read This” post and I apologize, I just am struggling putting this all together, especially with a new symptoms below).
A new symptom in July 2022/August 2022 is that I have noticed a slight facial droop to the L side of my face. It is not noticeable to others (my girlfriend states she doesn’t see it) but it has that heavy sensation to me and occasionally I feel that corner is a little wet (from saliva). Sometimes if im looking in the mirror I can pick up slight asymmetry but the facial exam is “normal.” It does seem intermittent but it is definitely present. I had a telehealth appt with the 2nd (current) neurologist who said my facial exam was normal and he ordered a bunch of lab tests and said I should come in 2 months for an in person visit but said he thinks generally “everything seems fine.” The lab tests were normal including CK, myoglobin, AcH bind Ab w/ Reflex, Aldolase, Muscle specific kinase antibody. We have a follow up appt in 2 months on 9/16/22 for an in person visit. My good friend is an ENT and he ordered and MRI of my facial nerves which was normal.
Generally speaking, my muscles never feel “fatigued.” I do experience muscle twitching sort of all over and not persistent in one place. They seem to happen in places that I’ve recently exerted “legs.” They are usually one or two twitches and stop. I don’t experience cramps or painful spasm. No shortness of breath, trouble swallowing or trouble talking.
For those who have read all of this, thank you.
