As many know I was given a diagnosis of Stiff Person Syndrome a few months ago. This was a differential diagnosis which means basically it was the best possible match of symptoms between what I was exhibiting and a known disease. Of course this is highly subjective. In other words, the individual sees the whole picture through their eyes which means that their can be a difference opinions I have found that each facility has a tendency to have a consistent opinion.
Also, SPS does indeed have a very specific blood test available, but most non-neurologists don't even want to try the test because it might get rejected by the insurance company unless it is ordered by thee right doctor for the right reasons. And to make matters worse, it only shows positive for 70% of the patients. In other words, 30% of infected patients will still show negative because they have enough antibodies to show symptoms, but not enough to show positive on a test.
For over a year, I showed what could be considered to be intermittent or inconsistent or early stage symptoms. Then suddenly on 10/5 I showed severe symptoms that caused the physician I was seeing to called 911. When the ambulance got there, the episode was just ending (about 45 minutes). I told them I wanted to drive home and sleep it off. The doctor told me that I should go to the hospital because they would send me somewhere they could do the testing and hopefully get started on treating me.ic
The "Gold Standard" treatment that the hospital I was sent to swore by is actually controversial among the different neurological facilities that consider themselves capable of treating SPS.. My doctor wanted me sent home to his rehab facility instead of sent home to my home.
i obediently filled all the prescriptions even though they made me nearly comatose at home. I spent about 16 hours a day asleep then was only about 35 to 85% clear the rest of the day.
On 10/19 we went once again to the doctor at home with my daughter driving this time. Once again I had a severe spasm in the office and was taken by ambulance to the local hospital. This time the plan was to set me up to return to my doctor's office as a rehab patient. However, another doctor felt like a better immediate plan might be for me to be sent to this hospital in Phoenix for some advanced treatment.
When I got here they not only rejected the original diagnosis, they also initially rejected all the work that we were so carefully doing at home.
The entire process has included an immense number of tears and honestly some wondering where God was in all of this. We still don't understand why God would put things together the way that He has and we are having trouble putting the pieces together still.
But, we still believe the make of the universe has a plan for us. We have that promise. It has just been made very clear to me that we are not necessarily entitled to the details of that plan. But then again, what fun would that be if we always understood exactly what was over every rise and around every corner?
Look, I haven't been enjoying the ride lately. I don't know for sure if this side of heaven if I ever will again. I just don't know. But, I do even if I have to remind myself that God put this plan together. This is NOT my plan. But when God gave us the choice to follow HIm to love Him or not, he said, "I love you. I want you to love me," But I for one never heard, "When you want to," "When the view is nice" or anything else. And I know people who get away with that. Some seem to get to have relationships on their own terms. But no relationship works well that way.
As a counselor I watch people try to do that. I watch people to try to have one way relationships. Guess what, it NEVER works! As I write this I just had a conversation with one of the people I love more than anyone else in the world. He reminded me so much of who he knows God made me to be and although I didn't get any answers, he reminded me that right at this moment, I am doing exactly what I am doing right where I am supposed to be doing it. so Thank you God for your plan even if I can't buy a clue.