storgepaga
New member
- Joined
- Mar 27, 2021
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- PH
- City
- NCR
Hi all, I've been looking outside and was thinking I didn't need to actually post here. Especially that I know it can be difficult esp for the PALS to entertain posts.I appreciate the effort and have truly seen how helpful the forum people are though I wish this kind of forum did not exist---because I hope to see a world without ALS and other terminal illnesses.
I am 32, female, mother of 1 and wife of an awesome hubby! residing in the Philippines where I found out ALS drugs and assistance is almost nada. 1 yr + ago I started noticing I cramped a lot, I would ask my cousin (who lives with me) if she experiences them a lot and very severely that it would stiffen and she'd say she does a lot so I assumed it was nothing. Bad sitting or posture perhaps? Then just half a year ago I got numbness and tingling which I know only a few ALS patients experience onset per read-ups. Things went on from there, I got twitches, very strong ones everywhere, then my husband noticed me not closing lids (I just figured recently it seems I can't close them tightly), having to pause when I talk bec I can't breathe and recently notice sudden weight loss and my hand looking like a "split hand" on my left side.
I also tried the pincer grasp on my left hand and instead of creating the normal circle my index finger bent difficult to reach the thumb. I can still button things but opening caps have been difficult and a failure sometimes with my left hand. My feet also makes these slappy sound when I walk. I noticed I easily choke on chunky food lately. I got cleared from MS ,RA, thyroid etc from many tests. I saw Mark 12345'sstory here about his symptoms and split hand and seemingly found similar things with him. He was first dismissed here but eventually came back with a post on possible MND per the team of neuros who checked him. To say my fears are overflowing is an understatement.
My EMG says radiculopathy/denervation or pinched nerve per conducting doctor and I will go back to my neuro for her say. I wouldn't wish the disease on anyone and I hope it can be erased from the Earth and I am scared. I admire the brave beings here. I would like to know if it would be best to get a neuromuscular expert to check me instead of an adult neurologist? To get a 2nd opinion? I saw stories of misdiagnosis of a pinched nerve and a lady who had a similar hand to me and a pinched nerve too who got misdiagnosed and eventually turned into ALS after so many appointments etc. Sorry it's a bit long but I thought I'd give the good details so reading is one-effort. My heartfelt thank you to everyone here and I pray the cure will be available soon!
*please see photos and the difference from the left hand
I am 32, female, mother of 1 and wife of an awesome hubby! residing in the Philippines where I found out ALS drugs and assistance is almost nada. 1 yr + ago I started noticing I cramped a lot, I would ask my cousin (who lives with me) if she experiences them a lot and very severely that it would stiffen and she'd say she does a lot so I assumed it was nothing. Bad sitting or posture perhaps? Then just half a year ago I got numbness and tingling which I know only a few ALS patients experience onset per read-ups. Things went on from there, I got twitches, very strong ones everywhere, then my husband noticed me not closing lids (I just figured recently it seems I can't close them tightly), having to pause when I talk bec I can't breathe and recently notice sudden weight loss and my hand looking like a "split hand" on my left side.
I also tried the pincer grasp on my left hand and instead of creating the normal circle my index finger bent difficult to reach the thumb. I can still button things but opening caps have been difficult and a failure sometimes with my left hand. My feet also makes these slappy sound when I walk. I noticed I easily choke on chunky food lately. I got cleared from MS ,RA, thyroid etc from many tests. I saw Mark 12345'sstory here about his symptoms and split hand and seemingly found similar things with him. He was first dismissed here but eventually came back with a post on possible MND per the team of neuros who checked him. To say my fears are overflowing is an understatement.
My EMG says radiculopathy/denervation or pinched nerve per conducting doctor and I will go back to my neuro for her say. I wouldn't wish the disease on anyone and I hope it can be erased from the Earth and I am scared. I admire the brave beings here. I would like to know if it would be best to get a neuromuscular expert to check me instead of an adult neurologist? To get a 2nd opinion? I saw stories of misdiagnosis of a pinched nerve and a lady who had a similar hand to me and a pinched nerve too who got misdiagnosed and eventually turned into ALS after so many appointments etc. Sorry it's a bit long but I thought I'd give the good details so reading is one-effort. My heartfelt thank you to everyone here and I pray the cure will be available soon!
*please see photos and the difference from the left hand
Attachments
Last edited by a moderator: