Zipzipzip
New member
- Joined
- Aug 27, 2022
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- UT
Hi all,
I want to follow the example of others and thank those of you who spend your time answering questions for a group that is predominantly anxious. I also feel ashamed to be posting here and apologize in advance if my questions have been answered previously. I have read the sticky over and over and over for comfort but am still choosing to post as I feel I have encountered some contradictions in reading that post and closely following the experience of a friend and neighbor who was diagnosed with ALS a little over two years ago.
My first question is regarding an EMG. After a couple months of leg weakness, I have had a brain MRI, a CAT scan, several blood workups, and an MRI of my entire spine (upper cervical, mid-thorasic and lower lumbar), my PCP finally recommended I receive an EMG. I have an appointment this coming Tuesday. The problem is that I noticed the EMG is going to be done by Physiotherapist/Osteologist and not a neurologist. Is it even worth my time getting the EMG if it is not from a neurologist and preferably one who deals with ALS frequently? I assume if the EMG has abnormal results, this doctor will refer me out to a neurologist. I guess I am wondering if you feel I should skip this one and wait a few more months to meet with an actual neurologist instead? My real fear is being told something generic like “it doesn’t look good but you need to see a neurologist” . I think I would rather not know and then have someone I am certain has the expertise give me a more thorough exam.
To say my anxiety surrounding ALS has been completely debilitating would be an understatement. The past two months have been some of the worst of my 35 years of life and as a father of four kids under 9 years old, I have crippling fear that I might not be around for them. For those who might read this that have endured that reality I cannot lend you my heart enough…
My symptoms started a few months ago with a “feeling” of leg weakness. I know that the sticky specifically calls out “failing over feeling” but this is one area where I am a bit confused. My neighbor was diagnosed years ago but his symptoms started with a feeling of weakness before gradually worsening into failure of his right hand. So while the failure did technically happen “all of the sudden” It took months and months of progressing weakness before the failure actually set in. Am I missing something here?
My legs have never felt this weak and I first began noticing it when walking up the stairs. I am very active with CrossFit and in tune with my body and physiology. To ease my mind, I have gone and done heavy sets of front and back squats to prove to myself that I still have strength. I was glad to be able to execute squats well above 250lbs but I noticed that my legs fatigued much quicker and took much much longer to recover than they ever have before.
Another way I might explain it is that instead of feeling that sore, tired feeling I used to feel after a leg day, I now feel what can only be described as weakness in its place. When I run, I feel like my quads are dead weight. Again I know the sticky specifically mentions running and failure but this sensation is entirely new for me. Is quad/thigh onset ALS a thing? I know twitching is never a good indicator of ALS but in addition to this weakness I clearly feel, my right thigh feels weaker and twitches incessantly and I see fasciculation’s in patterns and waves that I have never seen before. Seeing those sends me down the anxiety hole over and over and over again each day.
My left leg now has a similar weakness and intermittent twitching but I definitely feel it in my quadriceps/thighs more than anywhere else on my body. I haven’t noticed any atrophy and I have yet to be told by any doctor or family member that I am exhibiting signs of “clinical weakness” but I am beginning to struggle more and more with walks, stairs, and certainly any kid of exercise. I also notice my joints in my foot and ankle, as well as my knee feeling sore and uncomfortable which my brain wants to tell me is from compensating for weakness in my quads.
At the end of the day, I know this post is only reassurance seeking which doesn’t solve any problems for the anxious. I do not plan to post again or to elaborate on any other symptoms unless asked to do so but I do welcome any feedback or thoughts you all might have. I’ll be honest in that any reassurance goes a very long way for me right now but it is not your job to make me feel better. I thank you if somehow you made it to the end of my very first internet post ever and wish you all the very best.
I want to follow the example of others and thank those of you who spend your time answering questions for a group that is predominantly anxious. I also feel ashamed to be posting here and apologize in advance if my questions have been answered previously. I have read the sticky over and over and over for comfort but am still choosing to post as I feel I have encountered some contradictions in reading that post and closely following the experience of a friend and neighbor who was diagnosed with ALS a little over two years ago.
My first question is regarding an EMG. After a couple months of leg weakness, I have had a brain MRI, a CAT scan, several blood workups, and an MRI of my entire spine (upper cervical, mid-thorasic and lower lumbar), my PCP finally recommended I receive an EMG. I have an appointment this coming Tuesday. The problem is that I noticed the EMG is going to be done by Physiotherapist/Osteologist and not a neurologist. Is it even worth my time getting the EMG if it is not from a neurologist and preferably one who deals with ALS frequently? I assume if the EMG has abnormal results, this doctor will refer me out to a neurologist. I guess I am wondering if you feel I should skip this one and wait a few more months to meet with an actual neurologist instead? My real fear is being told something generic like “it doesn’t look good but you need to see a neurologist” . I think I would rather not know and then have someone I am certain has the expertise give me a more thorough exam.
To say my anxiety surrounding ALS has been completely debilitating would be an understatement. The past two months have been some of the worst of my 35 years of life and as a father of four kids under 9 years old, I have crippling fear that I might not be around for them. For those who might read this that have endured that reality I cannot lend you my heart enough…
My symptoms started a few months ago with a “feeling” of leg weakness. I know that the sticky specifically calls out “failing over feeling” but this is one area where I am a bit confused. My neighbor was diagnosed years ago but his symptoms started with a feeling of weakness before gradually worsening into failure of his right hand. So while the failure did technically happen “all of the sudden” It took months and months of progressing weakness before the failure actually set in. Am I missing something here?
My legs have never felt this weak and I first began noticing it when walking up the stairs. I am very active with CrossFit and in tune with my body and physiology. To ease my mind, I have gone and done heavy sets of front and back squats to prove to myself that I still have strength. I was glad to be able to execute squats well above 250lbs but I noticed that my legs fatigued much quicker and took much much longer to recover than they ever have before.
Another way I might explain it is that instead of feeling that sore, tired feeling I used to feel after a leg day, I now feel what can only be described as weakness in its place. When I run, I feel like my quads are dead weight. Again I know the sticky specifically mentions running and failure but this sensation is entirely new for me. Is quad/thigh onset ALS a thing? I know twitching is never a good indicator of ALS but in addition to this weakness I clearly feel, my right thigh feels weaker and twitches incessantly and I see fasciculation’s in patterns and waves that I have never seen before. Seeing those sends me down the anxiety hole over and over and over again each day.
My left leg now has a similar weakness and intermittent twitching but I definitely feel it in my quadriceps/thighs more than anywhere else on my body. I haven’t noticed any atrophy and I have yet to be told by any doctor or family member that I am exhibiting signs of “clinical weakness” but I am beginning to struggle more and more with walks, stairs, and certainly any kid of exercise. I also notice my joints in my foot and ankle, as well as my knee feeling sore and uncomfortable which my brain wants to tell me is from compensating for weakness in my quads.
At the end of the day, I know this post is only reassurance seeking which doesn’t solve any problems for the anxious. I do not plan to post again or to elaborate on any other symptoms unless asked to do so but I do welcome any feedback or thoughts you all might have. I’ll be honest in that any reassurance goes a very long way for me right now but it is not your job to make me feel better. I thank you if somehow you made it to the end of my very first internet post ever and wish you all the very best.
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