Appointment cancelled

[karla r]

MUSC called me this morning to inform me my appointment for August 3rd has been cancelled due to my primary insurance saying they are out of network.
My secondary covers them, but they have chosen not to even apply for coverage through them. They did not give a reason. I can it guess it is because it is state Medicaid.
I did tell them they were out of network, and would have to apply for an exception, which they decided not to do.
Guess I am on hold until October.
I don't even know what to do about that.

 

[Nuts]

How frustrating. I am so sorry, Karla.
Becky

 

[lgelb]

Karla, who's your primary? Did you call them about requesting an out-of-network exception yourself, in advance, playing the ALS card? SC is not crawling with ALS centers but it's not actually on the provider to request an exception -- it's on you, unfortunately, as the policyholder.

Best,
Laurie

 

[karla r]

I got so tired of it, I cancelled my Medicare advantage plan and went back to original Medicare as of August 1. The woman at scheduling gave me an appointment for later in the day on August 3, my original appointment day.
I lose benefits, and copays are higher, but at least I can get seen where I need to be seen.
The first appointment is with dr Ruzhansky. Hoping it goes well.

 

[karla r]

It's not really an "advantage plan" if it will not pay for where you need to go.

 

[Green Queen]

Karla I'm so very sorry this appointment has been cancelled. August is so close...

Sometimes I think insurance agencies forget that they are dealing with real people.

 

[SKlocinski]

We started at MUSC also and saw Dr Ruzhansky. She was OK but seemed to go "straight by the book" as in don't ask for anything to be prescribed off label. We switched to the VA because, as the respiratory therapist at MUSC put it "they have more resources" and as I put it "you get more free stuff"

 

[karla r]

Musc rescheduled the appointment again. August 24 at 9am. Anybody who goes there know why they are so horrible at this? This is a total of 26 months trying to get am appointment.
I got very angry this time. Told them if they did it again, I was filing a complaint.
I wish there were other options in sc. Bit they pretty much can do whatever they want, since they have the only clinic both my insurances will cover.
I have no idea how the doctors are, bit getting an appointment really sucks.

 

[gooseberry]

Is there an mda clinic? Perhaps a private neuro you could see? Steve started with a privat3e, caring neuro and stayed with her until he got to clinic

 

[karla r]

Had the appointment this morning with Dr Ruzhansky. I liked her. She tested more reflexes than any other doctor has in the past. She said she needs more tests. Expected that. I go back Oct 3 for EMG, nerve conduction, and results of blood tests she had taken today. They did finally change my name to my correct name today.

 

[Green Queen]

Karla I'm so glad that the appointment has finally happened!

October really isn't that far away for the next one, which is good.

I know a lot of this is a waiting game, but waiting is not fun!

Thanks for letting us know.

 

[karla r]

Better update. Sorry, I was so exhausted yesterday I did a quick one.
Dr Ruzhansky said it may not be ALS, but still in that area. The reason was she only saw hyperreflexia in 2 regions instead of 3. And she said 3 were required for an ALS diagnosis. I think I have that correct. My caretaker and I had a bad night, we were both exhausted. She napped in the car since she had to drive us back home after the appointment, so I didn't have anyone to write things down.
She also said it could be another disorder that had a really long name I couldn't quite catch. She's doing more blood tests for it.
I was quite happy when she said maybe not ALS. She shot that down. She said that disorder could be just as bad, considering how quickly I've progressed. I really wish I could recall the name, because I think she really thinks that is what I have. The reason I think that is because she took time to explain it to me.
She said specific weaknesses are characteristic of the disorder, and I have them. She also asked a lot of questions about my family, because this disorder can be sporadic or inherited. So, she had a bunch of questions I had to ask my mom about mine and my brothers milestones as children. And some other things as well.
Information overload as far as things to remember, so the name didn't stick.
Based in the results of this set of blood work, and emg/nerve conduction, she said she may have to order more blood work next time for genetic testing.

This is hard. Faced with the possibility that what I have may be something inherited, and my children or grandchildren could have it, I'd rather have ALS and die a bit faster.

 

[ShiftKicker]

Karla- I'm so sorry you are having to get further testing. I am also profoundly sorry you are confronting the possibility of a hereditary disease. I am wondering if it's Adrenoleukodystrophy (or Adrenomyelopathy). It's devastating to think that whatever you have could be experienced by your offspring. I had a two month stretch where I worried about this before the tests came back negative- I prayed every single day that whatever I had would not affect my son.

I am thinking of you.

 

[Nikki J]

There is almost certainly a patient portal. Find it and sign up. What you can see on it varies - different systems show more or less. There might be your clinical note which would be great. But maybe not. You might see a visit summary which if you are lucky could show diagnoses and tests ordered. Your lab results will be posted there eventually but you may be able to see what is pending which will tell you what they are looking for. But if you can't see your clinical note request it. My hospital system will send it through email though they need a written request mailed or faxed

 

[karla r]

I signed up for the patient portal. Does anyone who goes to musc , or sees dr Ruzhansky know about how long it usually takes for any of the information to show up there? So far, the only things on there are my current meds, the appointments for the 3rd of October, and a general "blood tests and emg/nc ordered."