Where to begin?

Hello! So much has happened the last few months it is hard to know where to begin, so bear with me. :) My husband got a new job in April. It was with the same company that hired us on to keep us here in Omaha. He was unhappy with the job he was currently at and his old manager reached out to him and recruited him back. We both aren't too big of fans with the hospital system, but there are much more opportunities for growth in his career and we felt it was where we needed go. Well, because of the job change, this meant that we had to change insurance. Bleh! This also meant that I could not go to the MS clinic anymore because the health system that we are now apart of is a very narrow network and we can only go to any associated facilities. We asked around his office and was recommended some neurologists that were good. Okay, I thought everything will be fine. My MS is fine, were are good. Due to the insurance change, I wasn't thinking about it affecting my mail order for my Copaxone. The mail order company I was using didn't ever call when I have a few doses left and when I realize I needed to order, I only had 1 dose left. This happened and so I called to place my order. They could not fill it because my benefits changed. Ugh! It took a whole lot of anxiety, phone calls, more anxiety, more phone calls, trying to figure out who I need to order through etc! The rough part of this was we had ordered our plane tickets to go to Hawaii on May 24th - June 1st before all this happened. I wanted to be able to have my drugs on hand since we would be gone for 2 weeks (roughly). At this time, I also needed to get in with my new neurologist to get a new rx to get the order filled. There were many complications getting my records transferred from my old neuro to my new neuro. Are you feeling the anxiety that I had?! Luckily, when I called the new dr, I was able to get in to Dr. Liebentritt (I will call her Dr. L) on May 13th (I called around the 9th). Also because of the plane trip that was coming up, I only had 3 Xanax for the plane rides to take so I couldn't take anything to calm me down. It didn't dawn on me to call my PCP until the day before the trip. They filled it and was stocked up! Not sure why I didn't think of that before. Anywho...I was finally able to get my drugs a few days before my trip so I could start taking them again. Whew! However, this experience has made me wish and one a one payer system. Insurance sucks! If everything could be more simplified it could make people lives that much stress free. Everything depends on insurance...the lives of humans depends on what the insurance companies say they will cover! I will get to that later. Okay, let's see...we had a wonderful, relaxing trip to Hawaii to spend time with family members that live out there. Just what we needed to calm us down from the 2 weeks insanity. :) When we returned, I had to call Dr. L and let here know what facility to use to have my MRI completed. I had one scheduled with Nebraska Medicine to complete my 6 month follow up to see how my Copaxone is working. Since I can't got to that facility, I needed to go to another which ended up being Lakeside Hospital. We got that scheduled and completed on June 17th and had a follow up visit on June 24th. That visit, Dr. L went over my scans and I have 2 new lesions in my brain. That wasn't good news. They are lesions that appear to be 4-6 weeks old. That seems like the time that I was having major stress and anxiety due to the insurance change. Anyway, after Dr. L and I talked about the 4 MS therapy drugs that I have been on (Avonex, Gilenya, Tecfidera, and Copaxone), she said "There is nothing I can do for you". That hit me hard! "What do you mean there is nothing you can do for me?", I thought to myself. Since she is a general neurologist, I need to see a MS Specialist. CRAP!! WHAT AM I SUPPOSED TO DO NOW!! I can't, my insurance won't cover it that is why I came to see her. She could sense my fear/anxiety/frustration so she said that she would write a letter to the insurance company advising that I need to see a specialist because the drugs that I need to be on needs to be closely monitored by a specialist. I felt homeless after I left her office. Here I was with a neurologist that could no longer help me and a neurologist that is who I need that insurance won't cover. Where do I go? In the meantime, Dr. L referred me to a family practice doctor to get me established with a new PCP who would be help to help me with my anxiety. I now get to be on Paxil which slowly but surely seems to be calming me down a bit with my daily anxieties. I then called QualChoice which is my new insurance company to see what I could do to get approval for the specialist. I knew Dr. L was writing a letting and was supposed to send it in, but she needed to do that. I needed to fill out a form and attach the letter to it and fax it in to their dept. I went into Dr. L office to drop off that form, and Dr. L was just finishing up that letter as I walked in (this was on a Wednesday and my appt was the previous Friday). Regardless, we got both forms faxed to the appropriate place and was relieved that it was in. A few day later, I got a call from Dr. L office and they said that I was approved to go back to Dr. Zabad for one year! Yay!! That was reliving that it got approved. When I called to set up the appointment, the only thing they had available was August 20th or something, but I would be put on a wait list for anything that becomes available for anything sooner. I got in on July 20th. Dr. Z reviewed my scans with us and completed a thorough exam. She could tell my weakness that I have been having in my right side and asked if I wanted some steroids. As I write this entry, I am on day 3 of my 3 day solumedrol infusion. It takes about 2 1/2 hours per dosage. I don't mind it, it is a lot better that taking the oral prednisone dosage that I had to do about a year or so ago. At our appointment we also discussed the next options for MS therapy. They both are powerful medications but have great results. Both appear to be cancer medications. The first one is Lemtrada: HOW LEMTRADA IS THOUGHT TO WORK It's believed that relapsing MS can occur when immune cells attack healthy parts of your central nervous system. While it's not known exactly how LEMTRADA works, it targets the cells that are thought to cause MS. During treatment LEMTRADA recognizes certain immune cells in the body, including those thought to cause MS. LEMTRADA removes many of those cells. After treatment YOUR IMMUNE SYSTEM slowly begins to replace the cells that were removed with new cells. For some people, certain cell types remain below normal levels 1 year after treatment. The second option is a non-FDA approved drug that is different but is show some amazing results. It is Rituxan(rituximab): Rituxan is a monoclonal antibody (CD20, from mouse tissue) that binds to a receptor on the surface of B cells. These cells are then destroyed and their levels in the circulation are decreased. It is approved for use in the treatment of lymphomas, leukemias, and autoimmune disorders. A Phase II trial, completed in 2006, examined the effect of a single course of Rituxan treatment in RRMS, with two infusions of 1,000 mg each, administered two weeks apart. At 48 weeks, the number of active lesions was reduced by 91 percent and relapses were reduced by 58 percent. The drug was also tested in a study of 30 people with RRMS who had experienced continued clinical activity despite treatment with one of the approved disease-modifying therapies. Participants received two doses of Rituxan, two weeks apart, while continuing to take their usual medication. Results showed gadolinium-enhancing lesions were reduced: 74 percent of post-treatment MRI scans were free of gadolinium-enhancing activity as compared with 26 percent that were free of gadolinium-enhancing activity at baseline. There was an 88-percent reduction in the average number of these lesions. The rituximab is what we are aiming for but have to get insurance approval first. Since this is non-FDA approved, I think it will be harder to obtain that approval. If that is the case, then we will do Lemtrada. It is sad to have to have my insurance basically choose what medication to take instead of my doctor who would know what would be best. This system is so messed up and just not right. That is not how it should be!! Of course, both medications have their risks and side effects but we have to think about long term in treating my MS. Yes, both drugs are scary and risky but my doctor remind me that if I go in with fear and thinking something is going to happen it will. The mind is a powerful think and it is all mind over matter. I am young and have a lot of life to live and if these drugs are able to help me live a good life with this disease then one of these needs to be administered. This illness will not control me! I will control it and still have time to enjoy my life with my family.