TippiLeigh
Active member
- Joined
- Jun 13, 2020
- Messages
- 96
- Reason
- DX UMND/PLS
- Diagnosis
- 07/2020
- Country
- US
- State
- CA
- City
- XXXX
Hello everyone. I’m a 43 year old mother of four. I’ve been experiencing increasing weakness over the last year or so. I kept joking that after I hit 40 everything went downhill. I’ve also had really bad GERD over the last decade, so I’ve been very focused on GI issues. (mostly nausea and getting full very fast.) I’ve lost a lot of weight, just in the last few months. I’m only 5‘ 2”, but I went from about 125lbs, to about 101lbs. I kept thinking the weight loss must be due to the GERD. But over the last couple of months, things have gotten worse and I’m having symptoms that don’t typically align with GI issues. Here’s where I currently am with symptoms. Some of this (weakness for example) have been present for quite a while, but there are some additional/new symptoms just over the last couple of months:
Weak legs, & tripping often
A couple of months ago I had what I thought was restless leg syndrome, but now realize they were twitching/jerking while I was sleeping
Leg twitching has increased. I do have it in both legs. It’s worse at night but the last few days I’m now seeing the twitching during the day
Difficulty jumping
Difficulty raising arms up high (it takes some effort and I can’t keep them up for more than a few seconds)
My left heel has become “numb”. I put that in quotes because I can feel sensation on my skin, but the inside feels numb, if that makes sense?
I’m noticing a bit of a foot drop on my left foot now. Very mild
Weak hands & dropping a lot of stuff (I don’t even feel things slipping, just boom! It’s on the floor)
Difficulty typing, buttoning, and overall loss of dexterity in my hands
When I look in the mirror my muscles look different. Thin, but also tight.
All my muscles are very tight, especially my legs. But even my hands feel like they just want to pull in. Same with my legs. Just want to curl them rather than straighten.
I’ve had some twitching deep in my abdomen. Like my stomach is getting pulled in. That’s only happened twice.
My tongue/mouth feel weird. It feels like pulling or involuntary movement in my mouth. Hard to explain. It’s actually gotten a tad better. Now it’s less involuntary movement, but now I’m having difficulty extending my tongue out of my mouth. I‘s like I have to concentrate and use effort to do it.
I have had a couple of weird throat episodes also. Not really choking, but almost like a short spasm in my throat. Even though I could breathe through it, it was very scary.
I think that’s the majority of my symptoms. So far my primary care physician has only ordered general labs (Which were all normal, including all electrolytes.) She’s going to send me for an MRI (still waiting for authorization) and I have an endoscopy and stomach emptying test scheduled. (Those were for the GI issues I was having.) She’s been fairly dismissive, but on Monday I’m going to ask for a referral to a neurologist. I want to chalk this all up to stress, but I don’t have new stressors in my life. I have a pretty good life actually. Which is why I’m so scared. I’m hoping that this turns out to be a very mild, curable disorder I have...but I also can’t help see how closely many of my symptoms line up with ALS. I would love any insight or experiences you can give. Thank you!
Weak legs, & tripping often
A couple of months ago I had what I thought was restless leg syndrome, but now realize they were twitching/jerking while I was sleeping
Leg twitching has increased. I do have it in both legs. It’s worse at night but the last few days I’m now seeing the twitching during the day
Difficulty jumping
Difficulty raising arms up high (it takes some effort and I can’t keep them up for more than a few seconds)
My left heel has become “numb”. I put that in quotes because I can feel sensation on my skin, but the inside feels numb, if that makes sense?
I’m noticing a bit of a foot drop on my left foot now. Very mild
Weak hands & dropping a lot of stuff (I don’t even feel things slipping, just boom! It’s on the floor)
Difficulty typing, buttoning, and overall loss of dexterity in my hands
When I look in the mirror my muscles look different. Thin, but also tight.
All my muscles are very tight, especially my legs. But even my hands feel like they just want to pull in. Same with my legs. Just want to curl them rather than straighten.
I’ve had some twitching deep in my abdomen. Like my stomach is getting pulled in. That’s only happened twice.
My tongue/mouth feel weird. It feels like pulling or involuntary movement in my mouth. Hard to explain. It’s actually gotten a tad better. Now it’s less involuntary movement, but now I’m having difficulty extending my tongue out of my mouth. I‘s like I have to concentrate and use effort to do it.
I have had a couple of weird throat episodes also. Not really choking, but almost like a short spasm in my throat. Even though I could breathe through it, it was very scary.
I think that’s the majority of my symptoms. So far my primary care physician has only ordered general labs (Which were all normal, including all electrolytes.) She’s going to send me for an MRI (still waiting for authorization) and I have an endoscopy and stomach emptying test scheduled. (Those were for the GI issues I was having.) She’s been fairly dismissive, but on Monday I’m going to ask for a referral to a neurologist. I want to chalk this all up to stress, but I don’t have new stressors in my life. I have a pretty good life actually. Which is why I’m so scared. I’m hoping that this turns out to be a very mild, curable disorder I have...but I also can’t help see how closely many of my symptoms line up with ALS. I would love any insight or experiences you can give. Thank you!