I still haven't made it to the ALS clinic- they don't take my insurance and I don't have the money right now. It is really ok though, I figure if I have it I have it and the longer I wait the more likely it will show up. (Of course there could be some denial and I will admit I am kind of afraid of doctors right now 
I need some advice. I seemed to have leveled off for a few weeks but something seems to have knocked me for a loop this week. I am having a horrible time walking. My knee keeps buckling. It was doing this some before, but now it is scaring me (and those around me). I am really afraid of falling- more at a store than at home. Have any of you experienced this? I have been lucky so far- have either been able to catch myself or just fallen against a wall. My balance being off doesn't help. I am resisting a wheelchair. I have to stop frequently to rest and even that doesn't help. This is so frustrating. When do you know it is time for a wheelchair?
My arm is also getting worse. It takes forever to brush my hair- forget anything else above my head- my arms shake uncontrollably. Do wrist braces help with the wrist weakness?
I also have some symptoms not consistant with ALS- mild tremors (though some of what I thought were tremors the PT told me were my muscles shaking from over-excertion). And some autonomic problems (I can't remember the last time I sweated and temp regulation is off- if I start shaking from being cold it takes a long time to stop). If this sounds like anything anyone has heard of that I may have not been tested for please let me know.
The PT told me I have true weakness- to keep doing my stretches but that was all he could offer. I wasn't getting muscle strength back. I feel like he gave up on me. I don't know if he ever contacted my neuro.
Guess I need to let the neuro know what is going on. I think I am too stubborn sometimes. My kids are too young for me to be sick- lol- I know that makes a lot of sense.
Thank you everyone for everything- everyone here is so nice! I think it is true that people with ALS are the nicest people you could ever have the pleasure to meet
I need some advice. I seemed to have leveled off for a few weeks but something seems to have knocked me for a loop this week. I am having a horrible time walking. My knee keeps buckling. It was doing this some before, but now it is scaring me (and those around me). I am really afraid of falling- more at a store than at home. Have any of you experienced this? I have been lucky so far- have either been able to catch myself or just fallen against a wall. My balance being off doesn't help. I am resisting a wheelchair. I have to stop frequently to rest and even that doesn't help. This is so frustrating. When do you know it is time for a wheelchair?
My arm is also getting worse. It takes forever to brush my hair- forget anything else above my head- my arms shake uncontrollably. Do wrist braces help with the wrist weakness?
I also have some symptoms not consistant with ALS- mild tremors (though some of what I thought were tremors the PT told me were my muscles shaking from over-excertion). And some autonomic problems (I can't remember the last time I sweated and temp regulation is off- if I start shaking from being cold it takes a long time to stop). If this sounds like anything anyone has heard of that I may have not been tested for please let me know.
The PT told me I have true weakness- to keep doing my stretches but that was all he could offer. I wasn't getting muscle strength back. I feel like he gave up on me. I don't know if he ever contacted my neuro.
Guess I need to let the neuro know what is going on. I think I am too stubborn sometimes. My kids are too young for me to be sick- lol- I know that makes a lot of sense.
Thank you everyone for everything- everyone here is so nice! I think it is true that people with ALS are the nicest people you could ever have the pleasure to meet
