La11
New member
- Joined
- Mar 14, 2024
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Clearlake Oaks
Hello. Thank you for reading this and thank you for your kindness and strength and inspiration. This is definitely a community of Angels and I want to start by saying thank you. I have been using this forum as a place to find answers and hesitant to join as perhaps what is going on with me is not ALS.
However, we have been trying to find a diagnosis for my symptoms for over two years… in a nutshell.. Here are my symptoms and some dates.
October 2021 I noticed thenar atrophy, and was diagnosed with a thenar atrophy in my left hand. (I received the Johnson and Johnson Covid shot in April 2021. I realize this may not be relevant but at the time I thought it could be.)
They did numerous tests, including ruling out. Carpal tunnel, syrinx in my cervical spine, etc a sports medicine doctor did an EMG on my entire body, and after two hours, exclaimed “ I thought you had ALS, but you have EDS Ehlers Danios syndrome. “ Of course this freaked me out that he even mentioned ALS, but his view was the tendon is over flexible and not working properly where it attaches near my thumb and thenar area. I also showed my neurologist, and he thought as long as no new symptoms appear. Everything’s fine.
Fast forward to DEC 2022, I noticed on my RIGHT hand index and pointer fingers started feeling stiff, and eventually got stuck, and eventually pulled in my third finger, so my three middle fingers are stuck, and I could not lift them up when my hand is laying flat on a table .. for example. This continued to get worse over the next few months and eventually noticed weakness in my wrist and arm. I went back to my neurologist, and he thought this was not related to the thenar atrophy (left hand) as we already had figured that out w EDS diagnosis but wasn’t sure what was going on with my right hand. He ran some blood test and found I had high vitamin B and perhaps this was causing it. I also was in a car accident (with a TBI) in 2015 and diagnosed with a syrinx in my cervical spine so we ran another MRI, brain and neck which came back clean.. neurosurgeons said the syrinx is small and was not the cause of this, and it has also had a second opinion. Since then this (syrinx) is now ruled out for cause.
This neurologist also performed the second EMG last May 2023 and said he’s not seeing anything alarming.. and to contact him if any changes occur.
In the meantime, the weakness in my arm has gotten worse, and I can hardly write anymore, and I cannot type, I cannot pick up a water bottle and drink out of it… but I can still get my fingers to move a little bit and I’ve been working on keeping my wrist and arm as strong as possible but I have been diagnosed with clinical weakness since December 2022.
I will also mention I practiced massage therapy for 20 years, and perhaps this is related to overworking my hands for all those years.
I contacted my neurologist and explained my arm was getting weaker, and he referred me to UCSF neurology. I saw them about a month ago and they looked at everything and explained they weren’t sure what’s going on but next step is another EMG at UCSF. This is scheduled for March 27.
My left hand is not clinically diagnosed with atrophy, but is much more atrophied and smaller than my right hand, which almost looks swollen, possibly due to lack of blood flow from being so stuck with my wrist dropping forward… I don’t know if it’s considered wrist drop yet and I have not been diagnosed with wrist drop officially, but at this point it seems like it could be, although I am not an expert.
Something else to bring to your attention is my aunt expressed to me just before she passed away that our family had the Kennedys disease genetic now I’m not sure if she was tested and this is 100% accurate but after I learned about what that is I thought perhaps this could be that. The neurologist at UCSF explained, they’re not sure what this is but they thought the rate of progression is moving slowly. If the thenar atrophy, and the right hand are related, which I believe they are, that means it’s been over two years since my first symptom thenar atrophy. But if these two hands are not related regarding symptoms, then the right side weakness started in December 2022, so about a year and four months ago. Although my right arm is getting weaker, the rest of my body seems mostly normal. Meaning I’m able to still take my morning jog and do my stretching and strengthening exercises which I have been doing my entire life and not noticing too much weakness anywhere else.
What concerns me is I have been exhausted, and more so I am having muscle spasms or twitches… I’m not really sure how to tell the difference… But these happen only at night when I’m resting right before I fall asleep and I read other posts people are not concerned about twitching, unless it coincides with weakness which I do have so, therefore the twitching is very concerning. I will say being an active person most of my life that I feel I have always had muscle twitches all over my body just like I have now, but it seems they are getting worse and more noticeable, since all these hand and arm symptoms started.
Also, my right calf is much larger than my left calf but I feel like it’s been this way for at least 10 years and once a doctor told me he thought it had to do with poor blood circulation on that side.
I may be freaking out for no reason, but I’m very scared to go back and get this third EMG, the two different neurologist. I have been working with both seem like wonderful doctors, and I know I am in good hands whatever the outcome is. The neurologist at UCSF also knows about the Kennedys disease in my family as a possibility and we may be getting the genetic test when I see him next we were going to discuss this.
I guess I’m just wondering if anyone’s symptoms started with thenar atrophy? And then how long was it before the next symptoms showed up? And considering my right hand symptoms started about a year after the thenar atrophy and have pretty much stayed specific to the right wrist, arm and hand for over a year now, but also have progressed from the fingers to the wrist, and now seemingly up my arm, I’m scared this still could be ALS.
Again, I think you for reading this and I think you for any thoughts you may have or expert opinions out there and how slow or fast ALS can possibly progress once symptoms start.
Very truly grateful,
Lisa (age 48)
However, we have been trying to find a diagnosis for my symptoms for over two years… in a nutshell.. Here are my symptoms and some dates.
October 2021 I noticed thenar atrophy, and was diagnosed with a thenar atrophy in my left hand. (I received the Johnson and Johnson Covid shot in April 2021. I realize this may not be relevant but at the time I thought it could be.)
They did numerous tests, including ruling out. Carpal tunnel, syrinx in my cervical spine, etc a sports medicine doctor did an EMG on my entire body, and after two hours, exclaimed “ I thought you had ALS, but you have EDS Ehlers Danios syndrome. “ Of course this freaked me out that he even mentioned ALS, but his view was the tendon is over flexible and not working properly where it attaches near my thumb and thenar area. I also showed my neurologist, and he thought as long as no new symptoms appear. Everything’s fine.
Fast forward to DEC 2022, I noticed on my RIGHT hand index and pointer fingers started feeling stiff, and eventually got stuck, and eventually pulled in my third finger, so my three middle fingers are stuck, and I could not lift them up when my hand is laying flat on a table .. for example. This continued to get worse over the next few months and eventually noticed weakness in my wrist and arm. I went back to my neurologist, and he thought this was not related to the thenar atrophy (left hand) as we already had figured that out w EDS diagnosis but wasn’t sure what was going on with my right hand. He ran some blood test and found I had high vitamin B and perhaps this was causing it. I also was in a car accident (with a TBI) in 2015 and diagnosed with a syrinx in my cervical spine so we ran another MRI, brain and neck which came back clean.. neurosurgeons said the syrinx is small and was not the cause of this, and it has also had a second opinion. Since then this (syrinx) is now ruled out for cause.
This neurologist also performed the second EMG last May 2023 and said he’s not seeing anything alarming.. and to contact him if any changes occur.
In the meantime, the weakness in my arm has gotten worse, and I can hardly write anymore, and I cannot type, I cannot pick up a water bottle and drink out of it… but I can still get my fingers to move a little bit and I’ve been working on keeping my wrist and arm as strong as possible but I have been diagnosed with clinical weakness since December 2022.
I will also mention I practiced massage therapy for 20 years, and perhaps this is related to overworking my hands for all those years.
I contacted my neurologist and explained my arm was getting weaker, and he referred me to UCSF neurology. I saw them about a month ago and they looked at everything and explained they weren’t sure what’s going on but next step is another EMG at UCSF. This is scheduled for March 27.
My left hand is not clinically diagnosed with atrophy, but is much more atrophied and smaller than my right hand, which almost looks swollen, possibly due to lack of blood flow from being so stuck with my wrist dropping forward… I don’t know if it’s considered wrist drop yet and I have not been diagnosed with wrist drop officially, but at this point it seems like it could be, although I am not an expert.
Something else to bring to your attention is my aunt expressed to me just before she passed away that our family had the Kennedys disease genetic now I’m not sure if she was tested and this is 100% accurate but after I learned about what that is I thought perhaps this could be that. The neurologist at UCSF explained, they’re not sure what this is but they thought the rate of progression is moving slowly. If the thenar atrophy, and the right hand are related, which I believe they are, that means it’s been over two years since my first symptom thenar atrophy. But if these two hands are not related regarding symptoms, then the right side weakness started in December 2022, so about a year and four months ago. Although my right arm is getting weaker, the rest of my body seems mostly normal. Meaning I’m able to still take my morning jog and do my stretching and strengthening exercises which I have been doing my entire life and not noticing too much weakness anywhere else.
What concerns me is I have been exhausted, and more so I am having muscle spasms or twitches… I’m not really sure how to tell the difference… But these happen only at night when I’m resting right before I fall asleep and I read other posts people are not concerned about twitching, unless it coincides with weakness which I do have so, therefore the twitching is very concerning. I will say being an active person most of my life that I feel I have always had muscle twitches all over my body just like I have now, but it seems they are getting worse and more noticeable, since all these hand and arm symptoms started.
Also, my right calf is much larger than my left calf but I feel like it’s been this way for at least 10 years and once a doctor told me he thought it had to do with poor blood circulation on that side.
I may be freaking out for no reason, but I’m very scared to go back and get this third EMG, the two different neurologist. I have been working with both seem like wonderful doctors, and I know I am in good hands whatever the outcome is. The neurologist at UCSF also knows about the Kennedys disease in my family as a possibility and we may be getting the genetic test when I see him next we were going to discuss this.
I guess I’m just wondering if anyone’s symptoms started with thenar atrophy? And then how long was it before the next symptoms showed up? And considering my right hand symptoms started about a year after the thenar atrophy and have pretty much stayed specific to the right wrist, arm and hand for over a year now, but also have progressed from the fingers to the wrist, and now seemingly up my arm, I’m scared this still could be ALS.
Again, I think you for reading this and I think you for any thoughts you may have or expert opinions out there and how slow or fast ALS can possibly progress once symptoms start.
Very truly grateful,
Lisa (age 48)
