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karla r

Distinguished member
Joined
Apr 30, 2015
Messages
148
Reason
Learn about ALS
Country
US
State
South Carolina
City
roebuck
Went back on the 3rd. More tests. Doc doesn't know yet, bit did say to tell my long term care case manager she will do the paperwork for anything I need. That helps some. Also said she would speak to the loaner place about me keeping my loaner powerchair longer. They are saying I will need to return it by the end of the month unless the diagnosis is complete by then, which it probably won't be.
Maybe, Duke will know more before then. Appointment there is next Tuesday.
If not, I'll try to figure out something else.
I refuse to let it get me down!
 
Karla I think that this sounds like progress?
I do hope you get to keep hold of the chair!
 
If you go to Duke and the are able to do a clinical and emg, you will have your diagnosis.

Vince
 
She called this morning. She is waiting on a return call from the association. She wrote out new orders for me for a powerchair of my own, and some other DME she said I needed, and mailed them out to me. Hopefully, the right codes are on those, so we can move forward there. So, yes, definitely progress!
 
That's what it is for, Vince. Emg/nerve conduction and clinical evaluation.
 
Best wishes, Karla. I sincerely hope you get some sort of firm diagnosis or clues as to what is going on so you can be released from doubt.

I am also glad you have someone who is working hard to make sure you continue being able to use necessary equipment!

Fiona
 
Sorry to hear you are still in limbo, Karla, but you seem to have the right attitude.

Best,
Laurie
 
Duke said it doesn't look like als at this time. I still have motor neuron signs. Since they are so far away, and my secondary insurance does not cover them, we decided I will stay with MUSC while a diagnosis is found. The doc said he could also transfer me to their neuro clinic, but MUSC is the better choice for me due to distance and insurance.
I am very glad it is not als. Will be even happier when they figure out what it is.
Thank you all for the support, and, after talking to nikki, I am going to stay a while, if no one else objects, until we do know what is going on. I will keep to social responses, and will update my status when we know something definite. Otherwise, if you want to know where I am with my status, pm me, and I will let you know how it is going.
 
Well it's great news, but I can't imagine the frustration Karla.

Do keep us posted, I hope they solve it for you sooner than later!
 
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