Musings of a Medical Zebra

A Zebra Speaks

Archive for the ‘EDS Stuff’ Category

Blue Cross “found” The Pre-Approval Number

No Comments »

July 11th, 2015 Posted 3:15 pm

The kind people who deal with collections at the office where I had my PET Scan offered to submit an appeal for me. In the process of getting the appeal information together, one of these kind people called Blue Cross again. The woman called me later the same day to tell me the good news: Blue Cross was processing my claim. This was such a relief, and particularly great news given that it came a couple days before Christmas.

If you read my previous post, you’ll recall that my doctor’s nurse obtained a pre-approval number for my PET scan. Blue Cross should have processed the claim, but they told us that a pre-approval was never submitted. The Blue Cross representative, interestingly, asked my husband if we had the pre-approval in writing. Though they told him that they always send pre-approval letters to patients as they are processed, I have yet to receive one. I’ve had multiple MRIs and CT scans, but I have never received a copy of the pre-approval from Blue Cross.

During my phone conversation with the woman from collections, she told me that she had to pressure the Blue Cross representative for some time. Eventually, the Blue Cross representative admitted that they DID process the pre-approval for my PET scan. They had simply “misplaced” the documents involved with the pre-approval. I also learned during the phone conversation that Blue Cross regularly claims that they didn’t process pre-approvals for expensive tests like PET scans. (The bill for my PET scan was over $4,000.)

I’m confident that Blue Cross didn’t “misplace” anything related to my pre-approval. I’m confident that Blue Cross LIED. Blue Cross LIED to us on the phone when they told us they had no evidence of my pre-approval. Blue Cross LIED to my doctor’s nurse – – the same nurse who, God bless her, obtained the pre-approval and recorded the pre-approval number – – when she called on my behalf. Blue Cross LIED to the woman from the collections office during multiple phone conversations. I’m confident that Blue Cross is LYING to other patients about their pre-approvals right now.

If you have had a pre-approved claim denied by your insurance company, don’t be discouraged. Get the pre-approval number from the doctor’s office who ordered the test. When you receive the Explanation of Benefits (EOB) from your insurance company indicating the claim’s denial, call your insurance company and provide the pre-approval number. Ask for the name of person you spoke with – – always get the name of the people you speak with on the phone – – and write it down. Document the date and time, along with the conversation itself. If the insurance company still refuses to process the claim, call the office where the test was preformed. Provide them with the pre-approval number, and ask if they would be willing to contact the insurance company on your behalf. If you have to submit an appeal, ask the office if they can assist you with it or submit it for you. If you have to submit the appeal yourself, call your insurance company to find out what they require in the appeal and when the appeal has to be submitted. If you have anything to add to this, please leave a comment. 🙂

Blue Cross Denied My Pre-approved PET Scan!

No Comments »

December 22nd, 2014 Posted 12:38 pm

Last week I received an Explanation of Benefits (EOB) for my PET scan. I was quite surprised to find that my insurance – – by “my” insurance I mean the insurance my husband and I have through his employer – – denied the claim, making us responsible for the entire $4,100 bill. According to the insurance, Blue Cross, the test was medically unnecessary.

I began making phone calls in an attempt to sort out the mess. My doctor’s nurse seemed like the place to start, since she told me that she’d be taking care of the pre-approval. However, when I spoke with her on the phone, I learned that she doesn’t take care of the pre-approvals directly — rather, my doctor’s office contracts with a company that does it for them. I also learned that the test was pre-approved and that the nurse was given a confirmation number corresponding to the pre-approval. She gave me the confirmation number, along with the name of the company that was responsible for the pre-approval.

Meanwhile, my husband called Blue Cross and was told by a representative that they didn’t receive a request for pre-approval. (Isn’t that convenient?!) She asked if we had anything in writing that shows the PET scan was approved. (Nice!) My husband told her we have a confirmation number from the company that got the pre-approval. Of course the confirmation number meant nothing to her. (Again, convenient!)

I called the office that is handling the billing. The woman on the other end was interested in the confirmation number, so I gave it to her. She told me she would research the issue and call me back within a week. A couple hours later, my phone rang. It was the billing office. I was told that they were going to file an appeal. She said it would take 4-6 weeks to get a decision. I’ll hear back from them at that time.

I plan to call the company that handled the pre-approval. I am hoping that if I give them the confirmation number that they’ll be able to provide me with proof — perhaps a letter from Blue Cross — of the pre-approval. Providing evidence that the test was pre-approved should make the appeal unnecessary. That’s what a reasonable person would think. Unfortunately, insurance companies can be anything but reasonable.

I plan to make a couple phone calls this afternoon. I’ll update this when I have new information to share.

No PET Scan; Prolactin High


November 8th, 2014 Posted 6:08 pm

I noticed a few weeks ago that I was retaining a fair amount of fluid. When I weighed myself, I learned that I had gained over 15 pounds. Given that my pain and fatigue have been worse lately, it made sense that my prolactin was high.

When I saw my internist on Thursday, he took one look at me — I am clearly retaining fluid in my face — and commented that my prolactin had to be high. He ordered some labs, which I will get drawn in a couple days, and told me that it will take 5-10 days to correct my prolactin once we get my labs back and my medication is tweaked. Given that prolactin blocks pretty much everything, my thyroid, among other things, is likely out of wack. He also told me to put off the PET scan until we get my prolactin level back to normal because the high prolactin may interfere with the scan, making it appear as though I have health problems that I actually don’t have.

Hopefully I can get the labs drawn on Monday and get my medication increased by the end of the week. I look forward to feeling better.

Posted in EDS Stuff

PET Scan

No Comments »

November 3rd, 2014 Posted 11:54 pm

It occurred to me as I was leaving the pain clinic today that I haven’t posted for a really long time. Rather than catching up on everything that’s happened in the past couple years, I thought I’d talk about my appointment today and leave the rest for another post.

I had a follow-up appointment with my pain management doctor this morning. My rib dislocations became more frequent last year. I now have a couple ribs that are chronically dislocated – – one is stuck under my right shoulder blade and the other two, both are on the right side, are located in the middle of my rib cage. As you can guess, this has lead to a fair amount of pain – – so much so that I rarely feel well enough to leave the house anymore. Though I am taking a pretty good dose of pain medication, my pain level averages a 7/10 daily. Unfortunately there aren’t many medication options available, as I have already tried most of them – – this is something I find scary.

Today my doctor decided to order a PET scan, which I am scheduled for next week, to get a better look at my ribs. We’re hoping it will provide us with new information – – what I am not sure – – so that my pain can be dealt with more effectively.

On that note, I think I’ll end this post & get some sleep. Goodnight.

Iron Infusions

No Comments »

July 19th, 2012 Posted 5:10 pm

I found this post in my drafts. It was written on 9/15/2011, but apparently I never got around to posting it. So, here it is…

Over the past couple of months I’ve received seven iron infusions. My ferritin and iron levels were very low. I do not tolerate oral iron, so IV iron was my only option. Luckily I am not scared of needles and I’m an easy stick because I had to get a new IV each week. The first two forms of iron caused adverse reactions. The reaction I had to the second form was delayed by several hours. It caused my hematologist enough concern that he requested  I see him the next day.

I wasn’t a stranger to the problem causing iron.  I was infused with it three times — one infusion per week for three weeks. Everything seemed fine until  four hours after receiving the third infusion. At this point, I began to itch.

At first, I didn’t think much of it. When the itching woke me up — this was roughly 9 hours after receiving the infusion — I decided to look in the mirror. My chest and back were mostly covered with a rash. It hadn’t dawned on me what was occurring, so I went back to bed. I managed to fall asleep . I woke up again, due to itching, around 7am. I got out of bed for the second time to look in the mirror. This time, my eyelids were quite swollen, as were my arms and legs. I loaded up on benedryl, and called my hematologist a couple hours later. He requested that I see him. By the time I arrived at his office — the next morning — the rash and swelling were gone.

Making Progress


May 9th, 2011 Posted 6:29 pm

I have been seeing a new doctor in Chesterfield since March. Over the winter, I suddenly gained 15 pounds. I knew my diet wasn’t the problem, but I wasn’t sure what the problem actually was — my internist wasn’t sure either.

I found out about  my newest doctor through word of mouth. He had helped a fellow EDSer with sudden weight gain. Her situation sounded very similar to mine. I decided to make an appointment.

I am being treated for a number of health issues that he diagnosed via blood and urine tests. Apparently, the weight I had gained was fluid. The treatment I am receiving has enabled me to lose the fluid — apparently I have been retaining fluid for years, it has only recently gotten worse — and gain muscle over the past seven weeks. My doctor is happy with the progress I have made thus far, and so am I. I will continue to improve as the weeks pass. All the fluid I have gained recently and the fluid I have been carrying around for years will be gone — hopefully by the end of June.

The biggest relief for me is that my heart has improved. The fluid retention made my clicking heart valve even louder. As the fluid has left my body, the click has gotten quieter. 🙂 More details to follow at a later date…

Ehlers-Danlos syndrome (EDS) Awareness Month

No Comments »

May 3rd, 2011 Posted 9:50 pm

May is EDS awareness month. Please take the time to read some of my blog posts, check out the EDS info I have included, read more about EDS via a Google search, etc.

Posted in EDS Stuff


No Comments »

February 1st, 2011 Posted 11:23 am

Tired — that word sums up the last several months. Fortunately, I have a new sleep specialist. Not only is he a great doctor and a nice guy, but he also has an interest in EDS. At my first appointment, we spent 20-30 minutes just talking about EDS — the types and their manifestations.

When he was in medical school, EDS was still classified using Roman Numerals. For him, Classical EDS was split into two types — EDS Type I and EDS Type II. Now it’s one type and called Classical EDS or cEDS. Similarly, Hypermobility EDS was EDS Type III and Vascular EDS was EDS Type IV. They are now hEDS and vEDS, respectively.

Of course we didn’t just talk about EDS. The bulk of my time with him was spent learning about the various drugs that can be used to help me sleep, and those that can be used to keep me awake. Unlike my previous sleep specialist, my current doctor understands the most important reason for me to remain alert during the day  — so that I can drive, thus maintaining a certain level independence. 🙂

Currently, I’m taking a drug to keep me awake during the day and a couple drugs to help me to sleep at night. Though I still have a few nights a month where I am only able to sleep for a couple hours in a row, I would say that my ability to stay asleep has drastically improved. My level of alertness during the day has made some improvements as well, but not in proportion to my sleep. I still spend about half the week too tired to make it through the entire day without a 2-3 hour nap.

I meet with my sleep specialist again in February.  Perhaps he will have more suggestions, which will lead to further improvements. I will keep you posted. 🙂


1 Comment »

August 16th, 2010 Posted 11:37 pm

I realize it has been a very long time since I posted last. I need to get better about updating this. I promise to do that very soon.  🙂

Posted in EDS Stuff

May is Ehlers-Danlos syndrome Awareness Month

No Comments »

May 2nd, 2010 Posted 5:07 pm

Check out the following links for more information:

Ehlers-Danlos National Foundation
Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc.

Posted in EDS Stuff