Worried2023
Member
- Joined
- Mar 7, 2023
- Messages
- 10
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hi Everyone,
Sorry for posting another thread, the previous threads must have timed out.
Here are the previous threads: Unfortunately Back Working a DX, Looking for alternative reasons
I really am just asking for prayers for a good study tomorrow, it will be at John Hopkins. If you would be so kind as to pray and ask God to give me something else that isn't ALS related and non-terminal I would appreciate it. If everything goes well tomorrow I'll post the results. If you don't see a post, then either I'm ecstatic or it didn't go so well, and posting is my last concern.
Here is a little update on where I am at if you are interested please keep reading;
I started noticing shoulder atrophy, specifically anterior deltoid, around the end of August early September. My shoulder has discomfort now, and sometimes its a little painful. I have photos from before to compare and my MDs have noted it in my chart but haven't given a reasonable explanation for this yet. It kind of feels like my arm is pulling out of my socket, however no clinical weakness yet. My arm does feel heavier now and it shakes in certain positions which it didn't before. I have also noticed a very slight atrophy in my left foot arch. I happened to have a picture from a year ago when my feet were really itchy to compare. I'm also waking up feeling stiff now, and my fasciculations seem to be happening more in my arms now which in the past they were infrequent. Hoping this is just me noticing them more.
I've tried resting my shoulder for a long time, but the discomfort never really goes away, as soon as I wake up, the feeling of something is pulling on my shoulder area, and also around my subclavicular area on the same side. I get discomfort down my arm as well between bicep and trap. My bicep also looks a lot smaller around the brachialis muscle.
My tongue atrophy progressed to a point and now stopped, for now, but my throat by my Adams apple hurts in the morning until I swallow a bunch.
I agree I don't fit the typical ALS presentation, no UMN signs at all, strictly LMN only. This scared me since I didn't realize you could have PMA which is basically PLS but lower only. I don't have a reason for the atrophy on my shoulder, no exercising, or strenuous activity, no surgery etc...
I'm 8 months now into this nightmare, and I'm sure my study will show something at this point. If it doesn't then I'm going to bury this website and my fears, and move on with my life. I truly hope this happens.
Please keep me in your prayers, God is the only one who can change this outcome.
Thank you all for reading. I will keep you all in my prayers as well.
Sorry for posting another thread, the previous threads must have timed out.
Here are the previous threads: Unfortunately Back Working a DX, Looking for alternative reasons
I really am just asking for prayers for a good study tomorrow, it will be at John Hopkins. If you would be so kind as to pray and ask God to give me something else that isn't ALS related and non-terminal I would appreciate it. If everything goes well tomorrow I'll post the results. If you don't see a post, then either I'm ecstatic or it didn't go so well, and posting is my last concern.
Here is a little update on where I am at if you are interested please keep reading;
I started noticing shoulder atrophy, specifically anterior deltoid, around the end of August early September. My shoulder has discomfort now, and sometimes its a little painful. I have photos from before to compare and my MDs have noted it in my chart but haven't given a reasonable explanation for this yet. It kind of feels like my arm is pulling out of my socket, however no clinical weakness yet. My arm does feel heavier now and it shakes in certain positions which it didn't before. I have also noticed a very slight atrophy in my left foot arch. I happened to have a picture from a year ago when my feet were really itchy to compare. I'm also waking up feeling stiff now, and my fasciculations seem to be happening more in my arms now which in the past they were infrequent. Hoping this is just me noticing them more.
I've tried resting my shoulder for a long time, but the discomfort never really goes away, as soon as I wake up, the feeling of something is pulling on my shoulder area, and also around my subclavicular area on the same side. I get discomfort down my arm as well between bicep and trap. My bicep also looks a lot smaller around the brachialis muscle.
My tongue atrophy progressed to a point and now stopped, for now, but my throat by my Adams apple hurts in the morning until I swallow a bunch.
I agree I don't fit the typical ALS presentation, no UMN signs at all, strictly LMN only. This scared me since I didn't realize you could have PMA which is basically PLS but lower only. I don't have a reason for the atrophy on my shoulder, no exercising, or strenuous activity, no surgery etc...
I'm 8 months now into this nightmare, and I'm sure my study will show something at this point. If it doesn't then I'm going to bury this website and my fears, and move on with my life. I truly hope this happens.
Please keep me in your prayers, God is the only one who can change this outcome.
Thank you all for reading. I will keep you all in my prayers as well.