Westlawn
New member
- Joined
- Nov 8, 2021
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
First, Thank You to all of you that run this site and for taking the valuable time it takes to respond to these messages. It is with great consideration and after several months of visiting this forum that I have decided to post.
Earlier this year (March) I had trouble swallowing food, and would have the sensation that food was getting stuck in my throat. I would rarely choke, but it was a noticeable difference. I saw a gastroenterologist who advised that I had GERD and prescribed me acid reflux medicine. I initially did not take the medication and did not change my diet and the problem went away for a couple of months but is now back. Which leads me to believe it’s not related to GERD. In that time I’ve had two barium swallow studies that show the food is going down my throat but the second test showed issues with the transition from esophagus to my stomach. The speech therapist declined to advise what the cause was and said to follow up with neuro and gastro.
Additionally, I have for several months (maybe April) experienced tightness in both my right and left calves. It doesn’t matter if I’ve walked a great distance or not, the tightness is there. The tightness was initially intermittent and would at times alternate from right and left, and then at times it was both of my calves. More recently it has been much more persistent the last couple of months. Within the last few months (August) I’ve noticed a steady decline in weight loss to my thighs, legs, and feet. My clothes and shoes no longer fit in those specific areas. And most recently my wife and I have noticed a very visible indentation to my right lower leg just above my ankle. My legs were already very skinny but now they are becoming more frail what seems like by the day. I have weakness throughout my legs.
I have completed 3 MRIs (lumbar, spine, and brain) and CT scan and all came back normal.
I’ve had blood work completed by my PCP, neurologist, and rheumatologist which have not produced anything to signal this is a related to some other condition.
The neurologist completed the test where he watches you walk and then looks at your strength, etc. (not sure what that is called) and he also completed an initial EMG and NCV in my right and left leg and my right bicep. The EMG found a slight abnormality in my right shin area. He advised me that I have idiopathic progressive neuropathy and told me to follow-up in 3 months (initially visit was in Oct.) He advised me that I did not have ALS or MS, but did not speak to my muscle loss and weakness in both legs.
Fast-forward a few weeks and I became alarmed when my wife and I noticed the indention in my leg, the additional weight loss in both legs, and the onset of twitching throughout my body. I recently completed a follow-up visit (a month after initial) and he completed a shorter EMG and advised the second test confirmed the first findings. He also advised that the muscle twitching was present on the test and said it was likely due to benign fasciculation cramp syndrome. He was not able to speak to my leg muscle loss and the indentation and said he wasn’t certain (based on 2 visits) that the indentation wasn’t already present.
I have now made an appointment with a second neurologist in the hopes that he will be able to speak to the continued leg muscle loss and what appears to be atrophy to my lower leg. The appointment is set for early December and I fear that by the time the appointment comes my body will already have confirmed that I have ALS.
I worry because from what I read a misdiagnosis is given roughly 40% of the time and idiotic neuropathy is often given as a diagnosis.
I genuinely thank you for reading my message and for any providing any response.
Earlier this year (March) I had trouble swallowing food, and would have the sensation that food was getting stuck in my throat. I would rarely choke, but it was a noticeable difference. I saw a gastroenterologist who advised that I had GERD and prescribed me acid reflux medicine. I initially did not take the medication and did not change my diet and the problem went away for a couple of months but is now back. Which leads me to believe it’s not related to GERD. In that time I’ve had two barium swallow studies that show the food is going down my throat but the second test showed issues with the transition from esophagus to my stomach. The speech therapist declined to advise what the cause was and said to follow up with neuro and gastro.
Additionally, I have for several months (maybe April) experienced tightness in both my right and left calves. It doesn’t matter if I’ve walked a great distance or not, the tightness is there. The tightness was initially intermittent and would at times alternate from right and left, and then at times it was both of my calves. More recently it has been much more persistent the last couple of months. Within the last few months (August) I’ve noticed a steady decline in weight loss to my thighs, legs, and feet. My clothes and shoes no longer fit in those specific areas. And most recently my wife and I have noticed a very visible indentation to my right lower leg just above my ankle. My legs were already very skinny but now they are becoming more frail what seems like by the day. I have weakness throughout my legs.
I have completed 3 MRIs (lumbar, spine, and brain) and CT scan and all came back normal.
I’ve had blood work completed by my PCP, neurologist, and rheumatologist which have not produced anything to signal this is a related to some other condition.
The neurologist completed the test where he watches you walk and then looks at your strength, etc. (not sure what that is called) and he also completed an initial EMG and NCV in my right and left leg and my right bicep. The EMG found a slight abnormality in my right shin area. He advised me that I have idiopathic progressive neuropathy and told me to follow-up in 3 months (initially visit was in Oct.) He advised me that I did not have ALS or MS, but did not speak to my muscle loss and weakness in both legs.
Fast-forward a few weeks and I became alarmed when my wife and I noticed the indention in my leg, the additional weight loss in both legs, and the onset of twitching throughout my body. I recently completed a follow-up visit (a month after initial) and he completed a shorter EMG and advised the second test confirmed the first findings. He also advised that the muscle twitching was present on the test and said it was likely due to benign fasciculation cramp syndrome. He was not able to speak to my leg muscle loss and the indentation and said he wasn’t certain (based on 2 visits) that the indentation wasn’t already present.
I have now made an appointment with a second neurologist in the hopes that he will be able to speak to the continued leg muscle loss and what appears to be atrophy to my lower leg. The appointment is set for early December and I fear that by the time the appointment comes my body will already have confirmed that I have ALS.
I worry because from what I read a misdiagnosis is given roughly 40% of the time and idiotic neuropathy is often given as a diagnosis.
I genuinely thank you for reading my message and for any providing any response.