43 Year Old Woman, afraid I have ALS

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Clearwater AL

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TippiLeigh, Being in “limbo” awaiting answers and or a diagnosis
is a frustrating and difficult time to work through.

But… you are not alone. We’ve probably had a hundred Threads
of people in the same situation you are in now.

You’ve had 8 replies from very ALS knowledgeable members.
However, until you are physically seen by a Neurologist and
have any tests he/she determines… there’s not much more that
can be contributed to help you.

My suggestion from what you wrote…

“And based off of many of the stories I’ve read on here from
actually diagnosed ALS patients.”

A little self help… take a break from reading threads/posts of
people who have ALS. It is not a positive thing to do until you
see a neurologist. Again, “limbo” is a stress you can somewhat
relieve by giving this Forum a break too... until you get an
appointment.

Your husband being a doctor most likely would agree. :)
 

affected

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Symptoms didn’t start all over my body. They started with some general weakness in my left foot, which I no longer have use of and has now failed.
I didn't realise you are in a wheelchair, your descriptions did sound more generalised than this. I hope you get answers soon. We can't add anything further however, as we can't examine you. All the very best, it really ain't ALS until it is, so you still have lots of hope it is something far less sinister and that is what we hope for you. Do let us know when you get a diagnosis.
 

Bestfriends14

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if you have no use of your left foot, I assume you are using a mobility aid? If not, it would be much safer for you to do so to avoid falls. Having a foot that no longer works would make it difficult to take steps and walk, thus causing falls. Again, though, your symptoms do not align with progression of ALS. However, it is impossible to say until you've spoken with a neuromuscular specialist. Definitely come back and update us as to how things go with your neuro.
 

TippiLeigh

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Small update, but still in work up mode. I’ve finally been able to be seen by a neurologist locally and have been able to get some labs/imaging/exams done. Right now my neurologist says it’s definitely an upper motor neuron issue, potentially PLS, but he doesn’t want to confirm that yet. He’s sending me to another neuro specialist about 3 hours away who is more knowledgeable in that arena, but haven’t been able to get that scheduled yet. So still in limbo-land, but getting a little closer to an official diagnosis.
 

Nikki J

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Glad you got seen and are on the road to answers. Hope this next stop is a neuromuscular specialist. Let us know what happens next
 
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