I have always heard that in the absence of all of the evidence the simplest explanation is usually the correct one. It is a rule that I have always gone by. I have also kept an open mind looking for new information or evidence proving a more solid conclusion. The reason that I am babbling about this rule is that it has been bouncing in my head for three weeks now.
A few weeks ago, I received new evidence that may take my diagnosis in a different direction. My previous diagnosis was Behcet’s with suspected Chronic Progressive NeuroBehcet’s. I had come to terms with having a diagnosis that had nothing left for me to try as far as treatments or things to try to reverse this downward turn of my health. Doctor’s were never 100% confident that what was going on with me was just one thing. So we were left with the simplest thing which was the disease that I carried the HLA-B51 gene for and it seemed to be a part of the problem.
A few weeks ago, I tested slightly positive for Sjögren’s for the first time ever. My ANA levels were showing again which haven’t showed up for two years. So the new path of thinking is that I could be building that disease or it could be the start of evidence providing a more solid conclusion. There is one disease called Mixed Connective Tissue Disease (MCTD) out there that shows absolutely everything that I have without fault. My body has not yet shown the U1-RNP antibody for MCTD like it has shown the Sjögren’s antibody. But here is the funny thing; I carry both the HLA-DR4 and HLA-DQB1 genes that either could be a pre-destined gene for MCTD. Now just because you carry the gene that doesn’t mean that you have the disease or will ever get it but it does increase the likelihood of you getting it. So I believe that we are starting down the trail that will eventually show MCTD. That is what my gut tells me but it takes a while for these antibodies to show up sometimes. In the meantime, you treat whatever symptoms or diseases you see before you.
Now in absence of proof of MCTD, it really doesn’t matter other than that parts of my body that my immune system will destroy. I have already gone through the same treatments for all of these autoimmune diseases short of drastic measures such as stem-cell transplants or really risky procedures like that. It’s all the same treatment wise, suffering wise but not necessarily time-wise depending on the disease that is finally proved with more time and evidence. All of this gave me a grim realization that it really doesn’t matter at this point which autoimmune disease I have because the treatments fail me in the end. If there is something else, something completely different then there could be hope.
Things here in West Virginia are pretty much the same health wise. I am in bed most days, except those gifted days which are getting fewer. I have had some energy the past day which let me to do more than I am supposed to which is pretty much nothing. Because of my insolence today I feel like I have been hit by a truck. I couldn’t help it though. I am so tired of being in bed and feeling awful. I tried to imagine in my mind that I could do things that I could do just two years ago. These simple things backfired on me and I fell and hurt myself pretty badly. My tendons cannot support my muscle weight and my muscles can’t carry their own weight. It is as if I am going backwards in my development becoming this awkward pubescent that is tripping all over the place and can’t do anything right. I don’t want to think about what the coming years will be like so I will continue to do stupid things fighting this downward spiral with all that my heart and soul can hold on to. Some days I do ok. Some days I should be in hospital care for pain control and overall help. It is so all over the place.
We are still in need of help in the same realms as before: monetary, babysitting, a dependable car, friendship. We also have silly wishes like summer camp at Serenbe, this year for both kids plus us travelling to stay there for the week with them. But we have so many things to cover before that. I feel funny even mentioning things that aren’t of necessity.
Continue to keep our family in your prayers. My health is still really unsteady and unpredictable. Let us know as well how you are doing. We cannot thank everyone enough for what you have given so far in every little thing that you have given. Much love to you all!