Friday, January 20, 2012

During one of my resent doctors appointments a new deficiency was discovered. The frustrating part about this new discovery was that the test was done some time ago but the doctor that ordered the test and delivered the results decided it was not a big deal. He was the right doctor to order the test, read the results and take action. This is part of his specialty. When they called me with the results they said my testosterone was a little low. I was concerned about some other levels that had continued to decline even on treatment so I was focused elsewhere. Then on Monday I saw my gyn for a followup. He looked at all my previous labs and noticed that in August my testosterone was very low at 15. I told him that we had a current lab that also showed it was low but that I did not have a copy and I did not know the number. He searched for the results and found a report that stated it was low but had no number. He continued to look through labs until he found the actual results. His exact expression was "Oh Wow! That is not good." I asked him what the number was and he said it was undetectable.

So what exactly does this mean? Most people including myself thought no big deal this only effects your libido. What harm can this do to your body? I have too many other things to be concerned about. The answer can cause a lot of damage. One of the major problems we have been up against this past year is loss of muscle strength and my muscles starting to atrophy. We have looked into so many causes for this. Unfortunately because of all the neurological symptoms and the damage that was discovered in the white matter of my brain it is difficult to find the exact cause of each symptom. We have chased so many rabbit trails and I have undergone so many test with the hope that we might stumble upon an answer.

To be clear this does not mean that we have an answer to the problem but that we have one more piece of the puzzle. It also means that we have another hurdle to jump. One of the reasons this was such a huge surprise is because I have an endocrine disorder that causes me to have extremely high levels of testosterone. Now I have an undetectable level. This also adds to the mystery of all the vitamin deficiency. To date we are treating for deficiencies in iron, B12, B6, D, and now testosterone. I take supplements for many other vitamins because they are so low and we are trying to prevent a full blown deficiency in those as well. I am taking prescription strength doses yet we continue to watch these numbers fall. The only progress that we have made is with B12 and that is injected into one of my muscles every week. My iron continues to drop. It has dropped as much as 45 points in 8 weeks. I have been through all the test to check for bleeding but so far everything has come back clear.

I had another round of blood work done Wed to see if any of my levels are improving. If they continue to drop and do not improve we will eventually get to a place where I have to start having some of these given by infusion. This is very expensive, time consuming and can cause serious side effects. Our prayer is that we will find the source and start seeing some progress. For now we continue to treat, test and wait.

Wednesday, January 18, 2012

My First Appointment With a Neurologist

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.

Tuesday, January 10, 2012

Not a good day.

I was hoping to fill in some more gaps tonight. I really want to try to keep posting because I really do feel like it is good therapy. Unfortunately today was a tough day with some challenges. As I type this my hands are not working as well as they should and my mind in pretty cloudy. It takes a lot of energy to focus and to type. My hands and arms are very weak today and I have been in a lot of pain today. I made an appointment with my dr today but he can not see me until next week. Usually I can get in the same day or the next. It's ok though because I really like my PCP and he is worth waiting to see.

It is hard to get used to these set backs. I made the decision to stop my injections until I see the Neurologist at UMAS. My neurologist in Fayetteville said I should be able to make it a month between injections by now but I have set backs as little as 1 week apart. We are going to see if the injections are masking symptoms. I need the UMAS doctor to see exactly what is happening. This means that we might see more set backs between now and then. For now we think this is the best thing to do even if it means some temporary frustration. I'm back to having to rest a lot during the days. I try to be up and around as much as possible when the kids are home but I am already tired of feeling this way again.

This is all I have for tonight. I will try to add more tomorrow.

Sunday, January 8, 2012

How We Got Here...Continued.

This is where things get complicated. Not just medically but in trying to write down how we got here. There are a lot of holes in my memory as this is one of the things that has been affected. Another reason for me starting this blog is for therapy. Not just emotional therapy but also physical therapy. I spent a great deal of time with my mind idle due to the inability to process information. I may end up jumping around some but I will try to stay on track as much as I can.

As most of you know we had a very hash winter. It was very cold and we had a ton of snow. This ended up being very hard on me physically. After Grandma died I ended up with a respiratory infection. This was followed by over a month of mouth sores and flu like symptoms. I just couldn't seem to fight off what ever was attacking my system. At the same time we learned that James' dad had become ill. His lungs were shutting down. We also found out that my sister did not have ALS nor did she have MS. After 2 months of doctors appointments they finally said that she might have Gunilla-barré syndrome. She believed that this was the case from the beginning. Unfortunately because they would not test her early they had lost the window of opportunity that would allow them to do so.

As we headed into February my body became weaker and weaker. My muscles hurt all the time, I was having terrible headaches, I was weak and I was always painfully cold. Usually I am the one that is hot and running fans while others are wrapped in blankets. My bones would ache like they were broken. I would not go outside unless I had to. Any light caused my eyes to burn and my head to ache. I was having more and more anxiety and was dealing with bouts of anger. I felt like I had the flu day after day after day. There was no relief. No matter what I took I had no relief.

During this time we had Abbie staying with us. Her mom and dad were in Ukraine bringing home their other two children. They were hoping for things to go quickly and that there time in Ukraine would be short. Instead they were there for two months. This was taking a toll on Abbie and while we loved having her we were not expecting my health to get so bad.

We were starting to see some relief form the crazy winter storms as we were entering spring break. I was looking forward to getting back on our feet. I was still feeling bad but I was determined to beat what ever was attacking me. I was still having to sleep a lot as I was still very weak and tired all the time. On the Sunday leading into Spring Break our youngest plugged our main toilet causing the back part of our house to flood with "poo water". I was laying down and James was gone. The kids called James and tried to fix it on their own to spare me the problem. Instead it only intensified. I snapped. James came home and basically grounded me to my room while he tried to clean it up. We ended up having to call insurance and we had to have all the flooring replaced. We were able to have the tile in the bathroom cleaned and the bedrooms were okay but the rest of the flooring in the house had to be replaced. Months later we would find out that they did not check Kayla's room closely and it damaged her flooring and furniture.

I do not remember when this happened but at some point I told my doctor that I could not live like this anymore. We have to do something because something was wrong. I ended up seeing my gyn and she believed that I was in the beginning stages of fibromyalgia. After talking to my doctor he referred me to a Rheumatologists. I was not able to get an appointment with him until March 2012. My PCP decided to start me on the medications for Fibromyalgia. Over time I started to see some improvement with the pain.

In the mean time I was having other symptoms that I was not telling people about. I would kind of talk about them in passing but friends would say "oh I forget my keys too" and things like that so I let it go. As time went on things were getting worse. My toes were painfully numb, I was having electric shocks that would go through my arms and legs, my balance was getting worse, I was getting lost and I was forgetting how to do daily task. I was dropping things all the time and I was starting to have spastic movements with my hands that would cause me to throw things when I would try to use my hands. I could not grasp things with my hands, could not use scissors and I was losing most of my fine motor skills. I was not able to tell where I was in relation to things around me so I would run into things and I could not pour the kids a cup of milk with out spilling it everywhere. I began to have blurred vision that made it impossible to read. The list literally goes on and on. My physician was growing more and more concerned and recommended that I see a Neurologist.

While waiting for that appointment I ended up seeing an Endocrinologist for the endocrine disease that I was diagnosed with while going through fertility treatment 10 years ago. As soon as she saw me and did the initial exam she said "you have B12 deficiency". This was the beginning of a very long road but was also the beginning to some answers we were praying for. She started labs and started me on high doses of B12. Our next step was to see the Neurologist.

Saturday, January 7, 2012

How We Got Here?

To be honest we are still trying to figure that out. There is still so much that does not make sense. So many questions unanswered. Due to test results we are not sure when the initial damage began but we started seeing noticeable symptoms over a year ago.

I started working with a new doctor in 2009 for an existing medical condition. I worked with this doctor every month for a year and during that time I was able to get some relief from that condition. I also worked with him concerning my weight. In a years time with the help of my physician I was able to loos 130 lbs. I was the healthiest I had been in years. I had a habit of putting everyone else first and not ever leaving time to take care of myself. True the Bible says to put others firsts but you still have to take care of your body. It is God's temple and I learned that there was nothing wrong with taking time to take care of myself.

Shortly after loosing so much weight I began having trouble with my balance. I would fall for no apparent reason and I was very clumsy. We would joke that I had lost so much weight that I lost my center of gravity. What we did not know was this was the beginning of a very serious problem.

In October of 2010 I started having sever pain in my upper back and ribs. I could not lay down due to the pain. I spent several nights sleeping (when I could sleep) sitting up. After several days I went to the doctor and found out that I was having a gallbladder attack. Within the week I was having surgery to remove my gallbladder. This was a simple surgery but I had a difficult time with recovery.

Shortly after surgery I began to have anxiety attacks. Sever anxiety attacks. My entire personality was changing. My family could tell and so could I. My doctor gave me a mild medication for depression and told me that with the surgery and with all the grief we had been through over the past 5 years my body was just tired. Reluctantly I started the medication. By the middle of December we knew that the medicine was only making things worse so he took me off of it. I think we tried something else that was a better fit but that too was short lived.

In December our family traveled to Florida to be with my sister and her family for Christmas. She was given a flu shot in November and by the end of that day she was unable to walk without her legs collapsing. She sounded fine when I would talk to her on the phone but the things she was telling me sounded serious. When I saw her at Christmas my heart was broken. She was having trouble using her hands and walking and I realized at that time that things were more serious than I thought. She did not sound sick but something was defiantly wrong.

We returned home from Florida at the end of December to the news that Grandma was in the hospital again. We were not too alarmed because she had been in and out since her surgery months previous to that. We had seen her at Thanksgiving and she looked great. We went straight to the hospital where we would learn that she was in ICU.

I will never forget holding her hand in ICU with her looking into my eyes while the doctors asked her son if he wanted to sign a do not resuscitate form. I knew it was serious and that we only had a short time left with her.Once we realized how serious things were James' family came as soon as possible. Our days were spent at the hospital spending as much time with her as possible. This was difficult though because she ended up being very contagious and so they made us suit up with gowns, gloves and mask everytime we entered her room.

On January 4th in the very early hours God called Grandma Patsy home and we began our earthly goodbyes. January 5th is my birthday as well as her only son's birthday. Grandma loved birthdays and this would prove to be a difficult birthday for us. I spent my birthday at the funeral home working on the details while the rest of the family had to deal with estate issues. My kids sat in the van because they refused to go into the funeral home. To top it off my sister was 14 hours away having test done to determine if she had ALS or MS. It was a very difficult day. The rest of the week we had to deal with the estate and get pictures ready for the service.

After the service was over and family returned home we started trying to get the kids back on some sort of routine. We thought we had made it over the hurdles and that life would finally return to "normal".

To Be Continued...

Friday, January 6, 2012

Seeking JOY in our Newest Journey

We are going to try using a different blog site to keep family and friends up to date about all things medical. It has been difficult to figure out the best way to keep everyone up to date. Please bear with us as we try to catch up on what has been happening this past year. It is difficult to know what to share and what not to share as things are ever changing and complicated.

One of the things we experienced form keeping our other blog is that when we keep a written track of our journey we are able to look back and see God's hand carrying us each step of the way. When you are in the midst of a season it is sometimes difficult to see God at work. Sometimes we are too close to see the whole picture and we need to be able to look at it in a different perspective at a latter time. I love how we are able to go back through our blog over and over again and see God's Grace written on every page. His faithfulness is so clear, his provision was never failing. Looking back helps us trust the future.

Thank you for joining us on this journey. Thank you for your support and prayers. Please do not be afraid to ask questions. If I am not able to talk about it that day I will be honest and get back with you as soon as I am able.

Our journey is still the same; we are just having to learn how to be more flexible, more creative and having to increase our sense of humor. After all laughter is the best medicine. God is still who he says he is and we still trust him to lead our family. God is still good all the time. All the time he is good. His plan is perfect for us even if we are not very fond of it.

In the midst of our new journey we are seeking JOY.