notme
Extremely helpful member
- Joined
- Apr 3, 2011
- Messages
- 2,605
- Reason
- PALS
- Diagnosis
- 08/2011
- Country
- US
- State
- Fl
- City
- Orlando
Hey Guys
I've been trying to refrain about posting here about my ongoing issues but really have nowhere else to turn other than the experts that live with this neuro crap daily.
Here's what's going on:
Falls: I'm losing my balance and falling--too much. Twice this week alone. My legs just wont support me properly. Not dizzy but it seems like I am. No balance at all.
Hands: I'm having multiple hand cramps per day. Very painful cramps that claw my entire hand then hurt for hours afterward. For those that don't know--the hands are the only area on my body with multiple-doc diagnosed atrophy and loss of function.
Legs; Spasms and more spasms. They hurt constantly from all the cramps and spasms. I am walking kind of like a duck just to keep upright.
BOdy: 2 years ago, the ALS neuro noted paraspinal core weakness. I'm having trouble sitting up without support as well.
I'm taking morphine, baclofen, valium, Lyrica and zanaflex--and none of it is helping in the least.
I even upped the dosage on the baclofen and am taking valium with the zanaflex when it gets really, really bad.
I've lost a lot of weight (intentionally) as I was at 200 pounds. NOw am below 150 since December. Took 3 months to loose all the weight. So, am pretty sure its not strain on taxed overweight muscles.
My legs are as hard as rocks most of the time--they look great--they are NOT. My only UMN signs are in my legs. Only LMN confirmed by EMG signs are in my hands. None in my legs-just UMN.
Im at the end of my rope. I can't concentrate. My daughter is being driven nuts because I cant do things I could do even three months ago. She has to do more and more. When I fall, I simply don't have the strength to get up. And I weight too much for her to lift me safely.
With my hand weakness I can't really use a walker much anymore--and my scooter will not work in my tiny mobile home-my electric wheelchair was lost when I had to move and had no way to transport it.
Any suggestions? Oh one last thing--I was really sick all of January--literally barely left bed as I had mega case of the flu.
Last thing is my O2 sats are dropping to the low 90's which is causing major shortness of breath with any exertion at all. I try not to use the O2 at the docs request (neuro) but am using the bipap most night.s
I've been trying to refrain about posting here about my ongoing issues but really have nowhere else to turn other than the experts that live with this neuro crap daily.
Here's what's going on:
Falls: I'm losing my balance and falling--too much. Twice this week alone. My legs just wont support me properly. Not dizzy but it seems like I am. No balance at all.
Hands: I'm having multiple hand cramps per day. Very painful cramps that claw my entire hand then hurt for hours afterward. For those that don't know--the hands are the only area on my body with multiple-doc diagnosed atrophy and loss of function.
Legs; Spasms and more spasms. They hurt constantly from all the cramps and spasms. I am walking kind of like a duck just to keep upright.
BOdy: 2 years ago, the ALS neuro noted paraspinal core weakness. I'm having trouble sitting up without support as well.
I'm taking morphine, baclofen, valium, Lyrica and zanaflex--and none of it is helping in the least.
I even upped the dosage on the baclofen and am taking valium with the zanaflex when it gets really, really bad.
I've lost a lot of weight (intentionally) as I was at 200 pounds. NOw am below 150 since December. Took 3 months to loose all the weight. So, am pretty sure its not strain on taxed overweight muscles.
My legs are as hard as rocks most of the time--they look great--they are NOT. My only UMN signs are in my legs. Only LMN confirmed by EMG signs are in my hands. None in my legs-just UMN.
Im at the end of my rope. I can't concentrate. My daughter is being driven nuts because I cant do things I could do even three months ago. She has to do more and more. When I fall, I simply don't have the strength to get up. And I weight too much for her to lift me safely.
With my hand weakness I can't really use a walker much anymore--and my scooter will not work in my tiny mobile home-my electric wheelchair was lost when I had to move and had no way to transport it.
Any suggestions? Oh one last thing--I was really sick all of January--literally barely left bed as I had mega case of the flu.
Last thing is my O2 sats are dropping to the low 90's which is causing major shortness of breath with any exertion at all. I try not to use the O2 at the docs request (neuro) but am using the bipap most night.s