Sorry it has taken us so long to post an update. I wish I could just dictate the update and it would appear. The past several weeks have been difficult physically which leads to things being difficult emotionally. I was able to take a much needed break from testing after the first of the year but we have found our selves back in full swing again.
February I ended up with a bad case of bronchitis that my body had a hard time fighting off. We are going on two years of my immune system being compromised. I get sick easily and then have a very difficult time fighting it. When my immune system is down then all the other things are magnified. I try to be carefull, I even had to stop helping in Noah's class and eating lunch with him at school. The times I gave in I was sick within 24 to 48 hours. I have made sure that I am there for the big stuff but I hated missing so much of his Kindergarten year.
Since last August we have seen progress then setbacks followed by more progress and then more setbacks. We still believe that things are better than they were a year ago but we are starting to see a lot of things regress.
It has been difficult to see so many symptoms return. The tremors are back but thankfully they seem to happen right after I wake up or they end up waking me up. The doctors keep asking me if I'm positive that they are tremors and not seizures? I am fully aware of what is happening and I can communicate during them so I am fairly positive they are not seizures. I am having trouble with my long term memory as well as short term memory now. Some days are worse than others. My balance and coordination are both pretty bad. It takes a lot out of me physically to control my body when walking. My legs and arms are weak again so I get tired easily. Some weeks the fatigue is better but at times it is debilitating. It takes me a while to get things done because I can only go a couple of hours before I need to rest. Some days I can push it other days it's all I can do to make my body physically move when it hits. Then there is the nerve pain. I told the neurologist that some days I feel like I need a root canal done in my toes and legs. He said that was actually a very accurate description of neuropathic pain.
A couple of months ago we did a repeat of labs to see how things were progressing. A few weeks later we met with one of my doctors to discuss the results. It was a productive visit as we ended up changing some meds around that so far have not made me sick. YEA! We are praying that these will work better and cause less side effects. We also determined that my B12 levels were low again and that I needed to go back to weekly injections instead of the monthly schedule we had just moved to. My vitamin D levels have gone from too low to being too high. She adjusted my dose and we will keep track of that now. This doctor is really good about trying to get levels to be optimal instead of just with in range.
The next day I met with my neurologist for further nerve testing. This time he was testing the legs and feet since we have already done the hands and arms. This time he also did an EMG for muscle function. That was dreadful and hopefully I won't have to repeat those any time soon.
At the end of the appointment he reviewed my results and went over previous testing that we have done. We knew that they had found several brain lesions but he had never shared that the MRI had shown upwards of 20 lesions. I have abnormal nerve conduction test as well as abnormal muscle response. I also have an elevated CRP that continues to come back higher each time we test. It is considered very high at 10 and my last one was almost 19. My neurologist is stumped because just when we think we have it narrowed down something new throws us off.
We are now in the process of a referral to the MAYO clinic in Rochester MN. I was very overwhelmed when he told us this was our next step and our best option for finding answers. I am still overwhelmed because of the cost and having to jump through all the hoops to get there. I have to fight through my selfish ways of wanting to be in control and remember that God has a plan and that it is perfect for me even when I do not like it. That he has a reason and a purpose that is greater than my own agenda.
We still have to wait to see if MAYO will accept my case and we are having to wait for insurance to approve an out of network facility. Our prayer is that God will open doors that we need opened and that he will close doors that we are not meant to go through. That he will give us peace about the overwhelming medical bills as well as peace surrounding the unknown. We pray that he will work out all the details and that we will be submissive to his will.
