MS Anniversary, and finally the Pill-Cam Test

Yesterday was my one year anniversary of being diagnosed with MS. Nothing really significant. October 9th was a good day though. After 8 months of side pain and dealing with trying to get the Pill-Cam test approved I finally get to have the test. My secondary insurance is going to cover it. My primary insurance still won't even after 3 different doctors had requested for a total of 5 times. It absolutely amazing to me that an insurance company would deny a test 5 times when 3 doctors had requested it. Anyone reading this who has a choice between Altius or some other insurance company do not choose Altius. They are the worse insurance company I have ever had to deal with. Their whole stance on this test is it is investigational therefore they should not have to pay for it. Every test I have ever had has been investigational, but what do I know, I am not a medical director determining people's fate based on very little information.

Anyway I am finally having this test after 8 months of pain. Last week the pain moved to my left side also, I must be getting better lol. I mean pain spreading has to be a good sign. Ok I am being sarcastic. The test is happening Monday I have to work but it was the only day they could do it or I would have to wait another 2 weeks. I am not waiting any longer. I spoke to my boss and he is going to let me leave to go have the procedure done. I have to swallow the pill and then hooked up with electrodes. I have to wear some sort of belt, but I don't care I want this test done so I can finally know if this is a GI problem or something else, in which case I can go to another doctor. My GI doctor still believes it is a GI problem so hopefully they will find something so this pain will go away. Well I am tired of writing.

New Information

I went for my 4th Tysabri infusion yesterday and was talking to the nurse about my side pain. I was telling her it has been 7 months and no doctor could figure it out. There are 2 more tests that could shed some light on, one is the small bowel X-ray and the next is the pill-cam test. The nurse told me to do both of the tests but if still nothing was found it could be neuropathic pain. I had never heard of this before now. She said one of my lesions in my brain could be causing this, and there was a medicine I could try. I like my neurologist but he didn't even bring this up at anytime when I was telling him about this pain. It could still be a GI problem but at least its being narrowed down. Tuesday I go in for the X-ray test.

I think I was having a relapse this last weekend. I was telling the nurse what had happened over the last month and mentioned I felt nauseous all last weekend and I was dry heaving. She asked if this had occurred before, it had and that's when she mentioned maybe it was a relapse. I though you couldn't do anything if you are on Tysabri but you can still have steroid treatments. She said if it got any worse I could come in for one. I said no that's ok I was feeling better.

That was my exciting day yesterday. I will write more on Tuesday.

Wow Its Late.....

It's almost 12:30am and I have to be up for work in less then 5 hours. I am having a really hard time sleeping tonight, which is weird since usually I fall asleep in front of the TV. My left foot feels very strange. Usually its relatively numb and I can barely feel it. Tonight especially my last 3 toes feel very different; I am not sure how to explain the feeling, it feels similar to nerve pain. Maybe it means I am going to get more feeling in my left foot. If that does happen then I would have to say this Tysabri is working pretty well. Now if only it would get rid of this side pain.

It has been 7 months to the day of this pain, nothing has really changed; no doctor can figure it out, all they can tell me is what it is not. At this point I just want my stupid insurance to pay for the test that 2 doctors have requested. I will be off work from Friday to Wednesday, hopefully I can get the doctors to schedule the next test I need to rule out some more problems and they will be closer to finding out why my side hurts.

I am sure a lot of you are wondering why I have let this drag on for so long; well when you have to deal with lots of incompetent medical personnel who only give you part of the test results it makes finding the actual problem take twice as long. Also if you have to go to different doctors to ask for the same test because your insurance company says you don't have the symptoms to warrant the test, this also takes more time. But I am not bitter I mean who doesn't like constant pain that doesn't go away. Ever! LOL. Well I am actually feeling tired, I will write more tomorrow.

Tysabri

I got a letter from my doctor last week saying 2 more people have been diagnosed with PML as a result of taking Tysabri. This was a huge blow. I spoke to my doctor on Tuesday the day of my third Tysabri infusion. He told me he wanted me to take it for another 3 months and then make a decision. I really don't have any other options. Avonex wasn't working so he doesn't feel going back to the drug will be that beneficial. He told me 3 lesions developed while I was on Avonex, one lesion developed on my brain stem a very bad spot to have a lesion. I also had 3 relapses while taking the drug. I am not sure what I am going to do. I really don't have any options until more drugs are FDA approved. Going off all medicines is not an option either. I want to be able to walk in a year. My doctor says I have a very aggressive case of MS and I need to stay on medicine if I plan to walk in 2 years. Well this is depressing so I will write later.

More Pain and Still No Answers

Today I woke up is so much pain. I laid in bed and watched my Friends DVD's. At around 11am Heath called me and told me not to wait for the doctor's office to call and to call them. I did and talked to a medical assistant. I explained what was going on. She proceeded to ask whether I thought it was a GI problem or something else. I told her I didn't know I am not a doctor. She then asked what my opinion was. I told her I didn't know. All I knew was that I was in more pain after the procedure. She told me she would talk to the doctor and call me back. By 3 she had not called back so I called again. I was put on hold for 10 minutes and then the phone hung up on me. I called back. Finally talked to the medical assistant. She told me the doctor did not believe it was a GI problem. He wanted me to have a urinalysis to see if it might be a kidney problem and to make an appointment with my primary care physician. I have an appointment with my PCP tomorrow morning. Hopefully he can refer me to a doctor that can find out what is wrong. I am suppose to go to work on Thursday, hopefully the pain will be bearable I can go to work.

Heath sent me a list of GI doctors in Salt Lake City so I can find a new one. I already have I just couldn't get an appointment until the 31st. Hopefully I can get some answers tomorrow. The Lortab is helping a little. Hopefully I can go to sleep soon. I am going to stop writing for now.

What to Do Now

Right now it is after midnight and I am sitting at my computer typing this. I tried to sleep but I am in way too much pain. On Friday I had another procedure to see what could be causing this pain, ever since I have been in even more pain. My right side hurts worse then ever. Hopefully the doctor will call me tomorrow and tell me what the problem is.

I had my second Tysabri infusion last Monday. Again it went fine. I got a really bad headache afterwards but other than that I feel fine. Also I think it is doing what it is suppose to. I feel better with the MS symptoms. My foot hasn't been going numb as much.

Right now it is my side pain. I just want this pain gone!!!! I am going to try to go to sleep again.

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.