- Joined
- Oct 12, 2024
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MD
- City
- Baltimore
Hello,
Thank you everyone who is willing to give me any feedback on my current situation. I have been reading a lot of posts on this site for the last couple of months and I have felt that the people on this forum have been extremely helpful and educating. I was hoping not to have to post, but my symptoms have been getting progressively worse and I have a GP, Neuro appt, and follow up EMG in the next two weeks and I wanted to make sure I covered all my basis
To give a bit of background info
Around mid July, I began having some lower back pain in the morning everyday right when I woke up. After about 30 minutes of moving around, it would go away. For first few weeks, I didn’t think much of it.
August 2024
The back pain started getting worse in the morning, and I developed a sharp cramp/pain in upper groin on right side of my leg crease, dull cramp sensation in lower inner thigh right above knees on both sides, and a bad groin itch that wouldnt go away. My left hip was also waking me up in the middle of the night in a tremendous amount of pain where I could not go back to sleep. This led me to get rheumatoid tests, full blood panel, STD tests and both a lower back and hip xray. All of this came back normal with some minor arthritis seen in hip and back xray. My primary care doctor gave me prednisone for a week to help out.
September 2024
After I finished the round of prednisone, I became incredibly anxious. The groin pain/burning sensation got so bad I couldn’t sleep. I started to get what I think were tremors in both my calves.My hips and back were in a tremendous amount of pain in the morning. I started getting these electric shock feelings independent of each other, but happening in both ankles, both forearms, and sometimes both biceps. I was prescribed gabapentin, but when I took it, it made my tremors worse and I actually felt them all the way up into my thighs.
In mid September, I met with orthopedic spine consultant through JHU who requested MRI of upper, mid, and lower back MRIs. Tests came back with only minor narrowing at L5-S1 and everything else seemed relatively normal for someone of my age. She did notice hyperreflexia in my right arm and right leg. She recommended 6 weeks of PT for my hip/lower back.
Around the end of September, I began to feel this tightness in my upper thigh on my right side and my right leg seemed to be fatiguing fairly quickly. My gait also seemed to be abnormal on my right leg, but I couldn’t pinpoint what was happening to make it that way.
October 2024
Beginning of October, the electric shock feelings, groin pain/burning sensation, and groin itching went away and were replaced with twitching. The hotspot for my twitching seemed to be in my left calf. It soon spread to other parts of my body including right calf, left hand/wrist, both thighs, right shoulder and right bicep.
Around mid October, I began to feel a bit of weakness in my right shoulder/upper arm. It was very subtle at first. I would really feel it after lifting weights at the gym or picking my kids up.
In an attempt to try and see if most of this stemmed from my anxiety, I decided to try out once a week Cognitive Behaviorial Therapy and I got a psychiatrist that prescribed me Viibryd. I also started my PT on my hip and my back. PT checked all my reflexes close to the end of the October and he said they were all normal. It was very apparent during my PT, that my right hip was a lot weaker than left hip and left side. I did every exercise everyday for two weeks and was able to get some relief from my left hip pain that woke me up all the time.
The twitching was happening almost 24/7 and especially noticeable at rest. I went to my general practitioner who requested a left hip MRI, brain MRI with contrast and an EMG. The MRIs both came up unremarkable. The EMG was done at the end of October by a resident. It was done on my right lower leg, right quad, right hand and right deltoid/upper arm. It came back normal except for mild fasciculations of +1 in Right Anterior Tib, Deep Per and also FDI Ulnar but that was it.
November 2024
Concentrating on PT in early November, I was struggling with this one exercise which was basically a standing leg raise with a band around your ankles. For whatever reason, when my right leg was planted and I was attempting to lift my left leg, I could not keep my hip, body and right leg straight with the ground even with a lot of support on my upper body. I took this back to my personal trainer who while watching me do back squats with relatively heavy weight noticed that I didn’t straighten my right leg at the top of my squats. When I straightened that leg, my body would turn slightly to the left. I took this back to my PT who looked at my foot and ankles and realized that my arch on my right foot had collapsed. He explained that this could be the main reason for my hip left pain and upper right thigh pain. We immediately pivoted to working to fix my right arch, but have had very little success with the exercises.
Another observation I noticed prominently in mid November, but had noticed for about a month of workouts… I would do a heavy upper body exercise such as bench press or pull downs that engage both arms. My left arm would feel normal while doing the workout. I would feel pushing/pulling soreness, normal workout fatigue while doing the exercise. My right normally dominant and stronger arm would be able to complete the motions of pressing or pulling, but I wouldn’t feel any type of soreness or pain or struggle while doing the weight. It almost felt like I was doing nothing with my right arm. About 15 minutes to an hour later, my right arm got nailed with soreness/massive fatigue that was way worse and took much longer to recover from.
Around Mid November, my twitching was still very constant, but I began to feel muscle spasming and cramping with it. Sometimes it would wake me up in the middle of the night. It was mostly happening in my calves favoring left one over right, but more recently it has gone up into my thighs on both legs and into both arches of my feet within the last month. It happens everyday now. I started to realize the nights after I worked out or did cardio, my twitching and cramping would be substantially worse.
December 2024
I switched from Viibryd to Prozac in early December which has worked much better for my anxiety. I got insoles for my arches and switched to more supportive shoes which help a little but my gait is still off and my right foot ducks out a bit. I get muscle spasm/cramps almost all the time at rest in both inner and outer thighs as well as both muscles of my calves and both arches of feet. I have pretty much abandoned exercise for the moment because it seems to make everything worse. The worst thing I am dealing with is my right arm/shoulder. Since, mid-October it has just gotten progressively worse. It only feels fine when I wake up in the morning, but as soon as I reach for a high cupboard or hold a drink in front of me or use it for any movement above shoulder level, I can complete the movement, but it feels massively fatigued afterwards. It will sometimes feel painful when used way too much, but for the most part seems extremely fatigued. I have a slight bit of clumsiness in my right hand, but dexterity seems to be there.
I know that was a lot, so here are my questions:
1. I know ALS foot drop with LMN usually involves dorsiflexor muscles which still seem strong with me since I can stand on toes and heels well. Has anyone ever had foot arch collapse as one of their earlier symptoms?
2. Has anyone who workout/used to workout ever felt this delayed onset fatigue in shoulder/arm after working out? Is this a sign of ALS? I can’t seem to talk to anyone who has felt this sensation before.
3. From my readings on your website and in other areas, it seems atypical for upper arm/shoulder onset in UMN, but not impossible. If it started distally in hands, I know you would be more likely to see failure in lifting weights, drinks, objects etc. My intuition would say that if I had some form of shoulder onset though, I wouldn’t necessarily see complete failure because there are so many muscles in that shoulder area that can compensate for the one that isn’t working. Would that be a correct assumption?
4. Based on my symptoms so far, are there any specific questions involving ALS I should try and ask my general practitioner or neurologist that I meet within the next two weeks? It is so hard to get these appointments I just want to make sure I ask the right questions and provide them with correct info.
I also have EMG January 16th on same spots I had my last one. I was wondering if I should’ve ask them to do my left leg, but from what I have read it doesn’t seem to make a difference. Thank you so much for taking the time to read this. I appreciate any and all responses I receive and plan on updating after my appointments.
Thank you everyone who is willing to give me any feedback on my current situation. I have been reading a lot of posts on this site for the last couple of months and I have felt that the people on this forum have been extremely helpful and educating. I was hoping not to have to post, but my symptoms have been getting progressively worse and I have a GP, Neuro appt, and follow up EMG in the next two weeks and I wanted to make sure I covered all my basis
To give a bit of background info
- I am a 37 year old male married with 2 daughters, ages 4 and 6
- I admittedly have very bad health anxiety
- I am fortunate to have most of my medical care through Johns Hopkins University, but because of the quality of work they do, it can take a very long time to get an appointment.
- I want to include the beginning portion of my symptoms to provide context for some of my tests and symptoms, BUT after reading enough posts on this site, I already know there is a 99.9% chance all responders will say my symptoms for July 2024-September 2024 are NOT ALS. The stuff from end of September until the end of this year has really concerned me though
- I have a job that involves a lot of sitting
- I am right hand dominant
- I have an extremely detailed lists on symptoms and incidences but I am going to try to keep it as brief as I can (I hope!)
Around mid July, I began having some lower back pain in the morning everyday right when I woke up. After about 30 minutes of moving around, it would go away. For first few weeks, I didn’t think much of it.
August 2024
The back pain started getting worse in the morning, and I developed a sharp cramp/pain in upper groin on right side of my leg crease, dull cramp sensation in lower inner thigh right above knees on both sides, and a bad groin itch that wouldnt go away. My left hip was also waking me up in the middle of the night in a tremendous amount of pain where I could not go back to sleep. This led me to get rheumatoid tests, full blood panel, STD tests and both a lower back and hip xray. All of this came back normal with some minor arthritis seen in hip and back xray. My primary care doctor gave me prednisone for a week to help out.
September 2024
After I finished the round of prednisone, I became incredibly anxious. The groin pain/burning sensation got so bad I couldn’t sleep. I started to get what I think were tremors in both my calves.My hips and back were in a tremendous amount of pain in the morning. I started getting these electric shock feelings independent of each other, but happening in both ankles, both forearms, and sometimes both biceps. I was prescribed gabapentin, but when I took it, it made my tremors worse and I actually felt them all the way up into my thighs.
In mid September, I met with orthopedic spine consultant through JHU who requested MRI of upper, mid, and lower back MRIs. Tests came back with only minor narrowing at L5-S1 and everything else seemed relatively normal for someone of my age. She did notice hyperreflexia in my right arm and right leg. She recommended 6 weeks of PT for my hip/lower back.
Around the end of September, I began to feel this tightness in my upper thigh on my right side and my right leg seemed to be fatiguing fairly quickly. My gait also seemed to be abnormal on my right leg, but I couldn’t pinpoint what was happening to make it that way.
October 2024
Beginning of October, the electric shock feelings, groin pain/burning sensation, and groin itching went away and were replaced with twitching. The hotspot for my twitching seemed to be in my left calf. It soon spread to other parts of my body including right calf, left hand/wrist, both thighs, right shoulder and right bicep.
Around mid October, I began to feel a bit of weakness in my right shoulder/upper arm. It was very subtle at first. I would really feel it after lifting weights at the gym or picking my kids up.
In an attempt to try and see if most of this stemmed from my anxiety, I decided to try out once a week Cognitive Behaviorial Therapy and I got a psychiatrist that prescribed me Viibryd. I also started my PT on my hip and my back. PT checked all my reflexes close to the end of the October and he said they were all normal. It was very apparent during my PT, that my right hip was a lot weaker than left hip and left side. I did every exercise everyday for two weeks and was able to get some relief from my left hip pain that woke me up all the time.
The twitching was happening almost 24/7 and especially noticeable at rest. I went to my general practitioner who requested a left hip MRI, brain MRI with contrast and an EMG. The MRIs both came up unremarkable. The EMG was done at the end of October by a resident. It was done on my right lower leg, right quad, right hand and right deltoid/upper arm. It came back normal except for mild fasciculations of +1 in Right Anterior Tib, Deep Per and also FDI Ulnar but that was it.
November 2024
Concentrating on PT in early November, I was struggling with this one exercise which was basically a standing leg raise with a band around your ankles. For whatever reason, when my right leg was planted and I was attempting to lift my left leg, I could not keep my hip, body and right leg straight with the ground even with a lot of support on my upper body. I took this back to my personal trainer who while watching me do back squats with relatively heavy weight noticed that I didn’t straighten my right leg at the top of my squats. When I straightened that leg, my body would turn slightly to the left. I took this back to my PT who looked at my foot and ankles and realized that my arch on my right foot had collapsed. He explained that this could be the main reason for my hip left pain and upper right thigh pain. We immediately pivoted to working to fix my right arch, but have had very little success with the exercises.
Another observation I noticed prominently in mid November, but had noticed for about a month of workouts… I would do a heavy upper body exercise such as bench press or pull downs that engage both arms. My left arm would feel normal while doing the workout. I would feel pushing/pulling soreness, normal workout fatigue while doing the exercise. My right normally dominant and stronger arm would be able to complete the motions of pressing or pulling, but I wouldn’t feel any type of soreness or pain or struggle while doing the weight. It almost felt like I was doing nothing with my right arm. About 15 minutes to an hour later, my right arm got nailed with soreness/massive fatigue that was way worse and took much longer to recover from.
Around Mid November, my twitching was still very constant, but I began to feel muscle spasming and cramping with it. Sometimes it would wake me up in the middle of the night. It was mostly happening in my calves favoring left one over right, but more recently it has gone up into my thighs on both legs and into both arches of my feet within the last month. It happens everyday now. I started to realize the nights after I worked out or did cardio, my twitching and cramping would be substantially worse.
December 2024
I switched from Viibryd to Prozac in early December which has worked much better for my anxiety. I got insoles for my arches and switched to more supportive shoes which help a little but my gait is still off and my right foot ducks out a bit. I get muscle spasm/cramps almost all the time at rest in both inner and outer thighs as well as both muscles of my calves and both arches of feet. I have pretty much abandoned exercise for the moment because it seems to make everything worse. The worst thing I am dealing with is my right arm/shoulder. Since, mid-October it has just gotten progressively worse. It only feels fine when I wake up in the morning, but as soon as I reach for a high cupboard or hold a drink in front of me or use it for any movement above shoulder level, I can complete the movement, but it feels massively fatigued afterwards. It will sometimes feel painful when used way too much, but for the most part seems extremely fatigued. I have a slight bit of clumsiness in my right hand, but dexterity seems to be there.
I know that was a lot, so here are my questions:
1. I know ALS foot drop with LMN usually involves dorsiflexor muscles which still seem strong with me since I can stand on toes and heels well. Has anyone ever had foot arch collapse as one of their earlier symptoms?
2. Has anyone who workout/used to workout ever felt this delayed onset fatigue in shoulder/arm after working out? Is this a sign of ALS? I can’t seem to talk to anyone who has felt this sensation before.
3. From my readings on your website and in other areas, it seems atypical for upper arm/shoulder onset in UMN, but not impossible. If it started distally in hands, I know you would be more likely to see failure in lifting weights, drinks, objects etc. My intuition would say that if I had some form of shoulder onset though, I wouldn’t necessarily see complete failure because there are so many muscles in that shoulder area that can compensate for the one that isn’t working. Would that be a correct assumption?
4. Based on my symptoms so far, are there any specific questions involving ALS I should try and ask my general practitioner or neurologist that I meet within the next two weeks? It is so hard to get these appointments I just want to make sure I ask the right questions and provide them with correct info.
I also have EMG January 16th on same spots I had my last one. I was wondering if I should’ve ask them to do my left leg, but from what I have read it doesn’t seem to make a difference. Thank you so much for taking the time to read this. I appreciate any and all responses I receive and plan on updating after my appointments.