Checking in...

Information about how to manage or reduce the severity of BFS symptoms

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Checking in...

Postby DeeDee on April 25th, 2005, 10:18 am

Hey guys-

Just thought I would check in. My legs are aching and I am twitching all over. It seems like some days, my symptoms are barely noticeable and on others my symptoms are raging. When the symptoms quiet down, I silently hope that this is the end of BFS. But low and behold, a few days later, the twitching frequency and pain turns up a few notches.

Thank you all for being here all these months. Who else could possibly understand what it feel like to have this? I am hoping for some positive reinforcement from some of you. I just feel like I am in a funk.

Thanks.... DeeDee
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Postby Stephanie on April 25th, 2005, 2:52 pm

Don't worry, we all have days like this. It makes it hard to put it out of our minds completely.
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Postby Ginlyn on April 25th, 2005, 10:23 pm

Dee Dee,

My twitching has been unreal lately.

My eyelid went wild today, and I don't think I've twitched there for years!

My feet have been bad, and a few major thumpers in my upper thigh area (where I hardly ever get them) woke me up this morning.

The twitching STILL ups my anxiety (esp. when bad)

I know where you are coming from.

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Postby DeeDee on April 26th, 2005, 12:38 pm

Thanks Ginny and Stephanie!

God is challenging me today!!!!

I just received the second portion of my EMG bill. The first portion was $2100, but yesterday I received another bill and it was for $2400. This test cost my family $4500. This whole thing happened because my insurance would not allow me to to see a neuromuscular specialist.

If that wasn't bad enough, a whole pack of chewing gum melted on my dryer walls.

Gosh, what else...... Ugghhh
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Postby Barb916 on April 26th, 2005, 12:53 pm

Dee Dee

I'd question those bills if I were you. There's NO WAY an EMG should cost that much! I just found my insurance statement to see what was charged from my EMG. Total charges was $700. And you know they always charge more that it actually cost because the insurance company only pays so much for certain tests. My insurance company ended up paying $422.07 for my EMG/NCV tests...TOTAL. Please, call and question your bill. That is outrageous what they are trying to charge you.

By the way, I feel for you regarding the dryer thing. I had crayon melted in my dryer once. It took months to get it all off!

Let me know if you make any headway with the bill.

See ya,

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Postby DeeDee on April 26th, 2005, 1:41 pm

Thanks Barb.

I thought it was ridiculous myself. What do I do? I have got so much going on these days.
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Postby Barb916 on April 26th, 2005, 2:47 pm

Dee Dee,

I'd start by calling the hospital or clinic that sent you the bill. Ask them to line item each charge...in other words, make them explain all charges. For example, they charged x-amout for the doctor's professional fee, x-amount for use of the equipment/building, x-amount for the supplies (needles) etc. Really, those should be the only charges. No way should that add up to over 4 grand. They are robbing you.

Good luck!

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Postby Ava on April 26th, 2005, 8:40 pm

Dee Dee,

I'll try to unearth my bill too. When I read your post I was stunned. I didn't pay much attention to my bill because it was 100% covered by insurance, but I'm sure it was not nearly $4000 and I went to the UCSF ALS center. I'll post later with the number.

As for the gum - I know just how you feel. I've got stickers stuck to the inside of my washer and dryer that I can't get off.

Take Care,

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Postby garym on April 26th, 2005, 9:05 pm

DeeDee,

Look at the memberlist and find the member that goes by the username DONT. Her name is Karen, and she works for a major health insurance company. I would send her a private message and ask for her help with that bill. That really does sound way to expensive. I've had three emg's, and none of them have been close to that much. Also, tell Karen I said "hi".

Take care,

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Postby Johnny on April 26th, 2005, 9:24 pm

Dee Dee,

I'm sorry to hear about your EMG bill. But look on the bright side - for $4500 I'll bet you got a comprehensive EMG. :wink:

Take care.

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Postby DeeDee on April 27th, 2005, 9:03 am

You couldn't have said that better Johnny! I was so relieved to be examined by a ALS specialist. My anxiety has decreased significantly since that appt. a few months ago.

But still...... $4500 for a 20 minute test is way more than I can afford. I called the billing department prior to the exam and I was quoted $1500. Needless to say this was a huge surprise. The response from the billing department was "We are sorry that you were misinformed. We can offer you a payment plan."

I am not only worn out physically and emotionally from BFS, now I am broke. Go figure.....

You guys are great!!!!
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Postby jenn on April 27th, 2005, 1:46 pm

Dee Dee,

Before you pay that outrageous bill: Most hospitals will give you a 50% discount if the expenses incurred are OUT OF POCKET. I learned this after an auto accident where I was to pay hospital expenses and be reimbursed. I was told that this is standard procedure, but you have to call and ask for it, they won't just offer (of course).Hope this helps.

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Postby DeeDee on April 27th, 2005, 2:10 pm

Hi Jenn,

I did ask for a discount. The billing department told me that they do not offer any discounts for physician services. They did give me 20% off the hospital portion which totaled $2180. Our portion was approx $1740....

We paid that and the MD visit, but now we are stuck with an additional $2500. I hope money grows on trees because we have to pay for a Baptism, 1st Birthday party, and braces for my older son all within 6 months. Obviously the braces will have to wait.

Maybe I could pick lottery numbers according to how much I twitch that day, lol
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Postby Slavin Balen on April 27th, 2005, 3:39 pm

4500 $ for a 20 minute test (sic!)
200 $ in Croatia!
That's the reason why I've done 4 EMNG tests last year.
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Postby joeyata1 on April 27th, 2005, 3:55 pm

never heard of $4500 FOR A TEST. I'D DEMAND A 70% REDUCTION OR YOU'LL SUE THEM FOR PRICE GOUGING. I ASSURE YOU THE INS COMPANY WOULD HAVE GIVEN THEM 700 BUCKS MAX. WHO'S YOUR INS COMPANY. I AHVE A ZERO DECUTIBLE $10 BUCK COPAY WITH UNITED HEALTHCARE. I CAN GO TO ALM SOT ANY DOC IN NATION WITHOUT A REFERAL. I SENT MY WIFE TO WORK THIS YEAR AFTER HCOKING ON 1000 A MONTH EHALTH BILLS. WE NOW PAY 150 A MONTH IN THE SCHOOL SYSTEM AND SHE'S OFF 3 MONTHS OF THE YEAR. I CAN GO ANYWERE FROM CLEVELAND CLINIC TO MAYO IN MINNESOTA
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