Thursday, June 12, 2008

The Medical Nightmare That is My Life!

Alright to explain the title of my blog: I had my first infusion of Tysabri last Wednesday and everything went fine. The next day is when everything went awry. I had an appointment with the general surgeon to discuss my right side pain and the possibility of exploratory surgery and/or removing my appendix. I went to the appointment and the surgeon is telling me he looked over my colonoscopy results and said the most likely source of my pain were the ulcers in my intestines, and the course of Entocort should have taken care of it. I was confused because I was not told about the ulcers or had been put on the Entocort by the GI specialist. I asked what he was talking about. He shown me the report. I told him I was not told about this. He said I should go talk to the GI center. He gave me a copy of the report. I left and went straight up to the GI center.

I get there and tell them I need to know what's going on since I had a general surgeon telling me results from the colonoscopy that I had never been told about. My doctor's medical assistant said she was on vacation and the other medical assistant gave me the results. I stated the only thing she told me was stop taking the Aleve and go back to my family doctor because I don't have a GI problem. She said nothing about taking this drug Entocort. The MA proceeds to tell me I should take the Entocort which was a steroid. Now I am not suppose to be taking steroids while being on Tysabri. This could cause a bad reaction. The MA gives me samples of the drug to take for 2 weeks. She also called the pharmacy to see what the interaction would be with the Tysabri. The pharmacist really didn't know for sure, but said it could cause problems if I was on it for a long period of time. Both drugs reduce the ability for the immune system to work. I would have to speak to my neurologist first to see if I could even take it.
I left and called my neurologist. After calling and leaving a message several times I finally said this isn't quite and emergency but it is really important; I finally got through to my doctor. He told me he only wanted me to take the drug for 7 days and then touch base with him and he would decide whether or not I could take it longer or if a different drug would be better.
One of the side effects of the Entocort is a respiratory infection.

I called everyone back on Monday to ask about that. I left two messages with the MA of the GI center, and left a message with my neurologist. I did not get a call back from either one until the next day. When I spoke to the MA at the GI center she told me the doctor had gone over my tests again and thought I could benefit from another test where I swallowed a camera so they could see more of my small intestines. I was asking in depth questions and she finally wasn't able to answer one of them so she told me quote"I don't want you to think I don't know anything, but these questions are relatively complicated and the doctor would be better at answering them.

She scheduled me an appointment for today. I went to the appointment and spoke to the doctor and he said I would need to be on the Entocort for 8 weeks, but he doesn't believe these ulcers are causing the pain I am in and he would like me to do the camera test. I told him my neurologist said I could only take the steroid for 7 days. The GI doctor gave me another drug to try and told me he would call my neurologist to discuss the issue.

Finally the doctors are trying to do something. I want this pain gone I am so tired of it!

On Thursday as all this crap is going on with the GI doctor, I also find out my insurance has denied my prescription of Provigil because the FDA hasn't approved it for fatigue in MS patients. This is ridiculous that a insurance company gets to dictate what is the right treatment is for me. Now I have a secondary insurance but I am not in the system so I couldn't get me prescription filled until Saturday. I only had 1 pill left at the time. Now I had started this process over 3 weeks ago and had been told by the PA in my neurologists office that they had sent everything in 2 weeks ago, but the insurance company said they hadn't received anything until that week. Someone is obviously lying since each group is saying something different.

All I can say is I hate insurance companies especially Altius. Everything I have tried to do has been a pain. They want a preauthorization for everything. I can't even get my antidepressant without a preauthorization, because there are cheaper drugs out there. Every drug they feel is equivalent I have tried, and they either don't work or have stopped working for me. I know this entry is long and some people have probably stopped reading but I had to vent about everything. I feel better now.



It is healthy to vent the frustrations. Does sound like you've got some complicated issues which are not easy to handle. And the challenges coming from the insurance company doesn't make it any easier. For the Provigil, you might try getting samples from your neurologist's office. That would be your best bet in the short term. Sorry you're going through all this crap. Hang in there and keep breathing deeply.

Jen said...

Thanks for the encouraging words. I actually got my provigil script filled it just took a couple of days for my secondary insurance to kick in.