This is another "fill in the gap" post. I admit that we did not share a lot of information about my health situation for way to long. In my mind I had several good reasons for leaving people out of the loop. In hind sight what I did most was alienate myself and my family when we needed it the most. There are many reasons why we did not go into great detail at the time but on the other hand God is teaching me that we did the very thing we teach others not to do. I want to post more on this but it is better suited for a different post. For now I will stick to the details surrounding my first appointment with the Neurologist in Fayetteville.
Soon after I begin having real conversations about my symptoms with James and with my PCP my doctor determined that my symptoms were becoming more serious and that I needed to see a Neurologist. I was relieved because I might be able to get some relief. James on the other hand took the referral more serious and was more concerned about what they might find.
While waiting for my first appointment to see the neurologist my symptoms continued. I was also having new symptoms almost daily. My hands were turning red and feverish as I would use them. It would go away as quickly as it would come on. I started having tremors all over my body that would cause me to shake like I was having a seizure. I was having stabbing pains through my body and I started to have sever heart palpation. The muscle spasms were getting worse causing many sleepless nights. Some nights I would have them every hour. I was having strange pressure in my ears that felt like some one was trying to shove a soup can through my ear from the inside out. At this point I was having to rest a lot, was in pain daily and my body was very weak and I was falling more often.
On September 28th we met with a neurologist in Fayetteville. As we waited for this appointment I began to research B12 deficiency. I went to the appointment with a tremendous amount of peace because so many of my symptoms were explained by this deficiency. I also went with an agenda. This was a bad idea. Partly because he was not very receptive to being told how we were going to proceed. My sister had seen several Neurologist and still had no idea what was happening. They wasted precious time that would cause them to loose a window of opportunity to test and treat for GB. Several told her it was in all in her mind. I was not going to waste time with any doctor. I was tired of being in pain and I was ready to get back to life. I had an agenda and a budget and he needed to make it work.
My agenda was not the only thing that caused my appointment to be stressful. James had taken the day off to go to the with me. It was very important for him to be there since we had so mush information to get through. Unfortunately we waited in the waiting room for two hours before we were called back. We were suppose to be done before the kids were out of school so we did not make arrangement's for them. James was able to stay while we talked to the nurse and gave her a history of my symptoms. Then he had to leave to pick up one of the kids from school. He came back as soon as he could but he was not able to meet with the Dr. Because the doctor was so late he ended up talking to me for 15 minuets. I was a new patient and was scheduled for an hour. We rushed through an exam and he scheduled an MRI of the brain and C Spine. I had an appointment to come back a week later. Before I left the nurse started to tell me what the process is for MS patients. This was a big shock. It did not fall into my plan for the appointment and as far as I could tell they had already decided what was wrong.
A few days later I went for my MRI's and then returned on that Friday for the results. James met the Neurologist for the first time that day. I think he came with an open mind. I came with my mind made up and ready for him to tell me that every thing was B12 related and that things would be back to normal soon. I was not prepared for what came next. He told us that my C Spine looked great but that the MRI of the brain came back abnormal. At this point he had our full attention. He told us that I had scattered white matter lesions on my brain. He said that everyone develops lesions as they age but that I was too young to have the number of lesions that they found. The lesions that were found showed that I had a Demyelinating Disease. We would not come out and tell us what he thought this meant. I asked him if this was from the B12...still determined to just be done with this awe full nightmare. He said no and he said it with confidence. He scheduled 3 more MRI's and blood work.
We left the office and went downstairs to the lab. We waited for over an hour for someone to come talk to us about labs. Finally a lady came out and said she was sorry it was taking so long, that my labs were complicated and that it was taking a long time to print out all the release forms. I have never heard of having to sign a release form for blood work. She said she would explain when she called me back. About 30 minuets later she called us back to begin lab work. This is the moment that we realized the seriousness of what we were up against. I walked into the lab where they had prepared 19 viles to collect blood. She handed me a stack of paper work and a release form stating that we agreed to pay the $5,000 in labs that were about to be drawn. We told her we had insurance and she said that insurance would most likely not cover these test and that they would not draw labs until we signed this paper saying we were responsible for paying them. We had never been faced with this before. We have good insurance and all our labs are covered but what if we were wrong. We don't have $5,000 to pay for them. We decided to leave with out doing blood work and that we would call insurance so we would know what we were up against. For the next 2 and a half weeks we fought insurance and ended up finding out that they would not cover the 2 genetic test that were ordered but they would cover everything else. I returned at the end of October to have labs drawn. By the end of that week they ended up taking 26 viles of blood. The following week (first week in November) brought more labs along with a lumbar puncture (spinal tap). I had given 31 viles of blood in about 10 days. I asked one of the nurses if that was safe or legal. All we could do is wait for results as symptoms continued to arise.