Jeeproteins
New member
- Joined
- May 8, 2021
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Los Angeles
Hello all,
I just wanted to start off by saying I have the utmost respect for all those in these forums I have been lurking in for weeks.
For the past few months I have been experiencing symptoms that have gotten steadily worse. In the last month especially, I have declined the fastest.
I'm only 29 years old, and I have been blown off by my general neurologists for months.
I was hospitalized in January for numbness and left side weakness. My EMG (left side only) , MRI, spinal tap and labs were all clean then. I started getting the tremor and fasisculations last month and they have gotten unbearable pretty quickly.
Unfortunately, since then I have developed clearly visible right hand atrophy (pics attached), right foot muscle atrophy (confirmed by my podiatrist), strong tremors in my tongue, chest, hands, legs, that don't let me sleep more than a half hour at a time. I believe the tremors are making me hypermetabolic, as I have been losing weight rapidly despite eating at a heavy calorie surplus. I can't walk on my right foot without pain and my right knee pops out as I walk. I have some drop foot (confirmed by podiatrist). I get cramping and pain using my hands/legs and my hands are incredibly bony now like they have never been before.
Also doubly unfortunately, I believe I have bulbar onset, as I first had swallowing problems, extreme neck stiffness and pain, dry mouth, and my esophagram showed I have esophageal motility problems already in my mid to distal esophagus.
I also have trouble speaking, with my tongue twitching and tiring quickly, and I do speak much more quietly and with slightly slurred words. My PFT was interpreted by a pulmonologist with research on respiratory function in ALS patients, and he wrote that my "The total lung capacity is less than the forced vital capacity percent predicted values by 11 percentage points, a somewhat unusual finding, but maybe related to respiratory muscle weakness, related to "paresthesias".
I know being diagnosed in a timely manner is crucial for clinical trials and time remaining. I am waiting to be seen by Cedars ALS Clinic but I have to wait until almost August.
Do you have any advice on how to get seen sooner? or anyone recommended? I just feel I am declining so quickly and it is terrifying.
I just wanted to start off by saying I have the utmost respect for all those in these forums I have been lurking in for weeks.
For the past few months I have been experiencing symptoms that have gotten steadily worse. In the last month especially, I have declined the fastest.
I'm only 29 years old, and I have been blown off by my general neurologists for months.
I was hospitalized in January for numbness and left side weakness. My EMG (left side only) , MRI, spinal tap and labs were all clean then. I started getting the tremor and fasisculations last month and they have gotten unbearable pretty quickly.
Unfortunately, since then I have developed clearly visible right hand atrophy (pics attached), right foot muscle atrophy (confirmed by my podiatrist), strong tremors in my tongue, chest, hands, legs, that don't let me sleep more than a half hour at a time. I believe the tremors are making me hypermetabolic, as I have been losing weight rapidly despite eating at a heavy calorie surplus. I can't walk on my right foot without pain and my right knee pops out as I walk. I have some drop foot (confirmed by podiatrist). I get cramping and pain using my hands/legs and my hands are incredibly bony now like they have never been before.
Also doubly unfortunately, I believe I have bulbar onset, as I first had swallowing problems, extreme neck stiffness and pain, dry mouth, and my esophagram showed I have esophageal motility problems already in my mid to distal esophagus.
I also have trouble speaking, with my tongue twitching and tiring quickly, and I do speak much more quietly and with slightly slurred words. My PFT was interpreted by a pulmonologist with research on respiratory function in ALS patients, and he wrote that my "The total lung capacity is less than the forced vital capacity percent predicted values by 11 percentage points, a somewhat unusual finding, but maybe related to respiratory muscle weakness, related to "paresthesias".
I know being diagnosed in a timely manner is crucial for clinical trials and time remaining. I am waiting to be seen by Cedars ALS Clinic but I have to wait until almost August.
Do you have any advice on how to get seen sooner? or anyone recommended? I just feel I am declining so quickly and it is terrifying.