Since my last update, I received results from my neuropsychology test which was a 3 hour test involving several components: memorization, math, puzzles, pattern identification, etc. The first thing the doc said was, "You are the mysterious woman." I didn't like the sound of that. He explained that his results show exactly what I've explained as the symptoms I've been experiencing. He said that while he is unable to definitively say I have this or that, he said he thinks it is MS. Really? We're back to that? I thought MS was off my radar since the neuro did not find any MS lesions in the MRI. The NP (neuropsychology) doc explained that a lot of my results show I process information the same way as a person with MS does.
For instance, there were two areas where I bombed the test, so bad that the NP doc said I scored worse than a person with Alzheimer's. I thought for sure it would have been the math portion but it was a memorization section instead. Doc explained that I got 3% correct; however, when the same test was reintroduced later in the session, I got almost 100% correct. He said people with MS typically have a hard time processing new information/data/situations at first, but when the dust settles, they are able to process very well.
NP doc said that while he cannot say 100% for sure that I have MS (because I am showing indications of other things), he said, "I can say you definitely have some sort of autoimmune disease. We just need to figure out which one." After I brought him up to speed on the cervical issue (needing surgery), he said that he would call my neuro and let her know that the cervical is a red herring, a lot of my symptoms are from an autoimmune disease based on my results with his test.
So now I'm confused, how can this doc think I might have MS when I had a normal MRI result. NP doc explained that 10% of people with MS have normal MRIs. Sometimes the lesions (if there are some) are located in an area of the brain that the MRI cannot detect. Doc said my neuro may change her mind about MS after seeing his report.
Since my last update, the numb areas are increasing: right foot constantly feels as if it is buried in sand, numbness has started below the knee on my right leg, the top of my left foot is going numb, half of my left hand is now numb as of this week, etc. I'm waiting to hear back from neuro's nurse as to when she can schedule me to see neuro to get her feedback from the new NP results.
Met with rheumatologist doc yesterday for follow up visit, and the arthritis meds have not helped with joint pain. I updated her on need for cervical surgery. Before I even told her about NP doc saying he feels strongly I have an autoimmune disease, she said, "I want to do bloodwork looking for connective tissue autoimmune diseases." I updated her on NP doc's conversation about his results. So I have two docs that are in agreement that an autoimmune disease is involved, but which one?
I've been scrambling to get all these results and feedback so I can take the information with me to STL. We'll leave soon. My dad said recently, "It's a shame we don't have any medical information about your birth parents." Indeed, just a sliver of information would shed a lot of light for my doctors.
Priority is to address cervical issue which may or may not be the root of the numbness. Regardless, my neck is collapsing and it needs to be fixed. As with any surgery, current symptoms may or may not get better and could get worse. As with my spine surgery, I'm going into the cervical surgery not with the intent of restoring feeling to numb areas, but to stop the collapsing. If feeling is restored, that will be gravy! :)
Yesterday, I started feeling overwhelmed. So much is happening so fast, but I know God will only give me what He knows I can handle. I found out there is a local one-day archery tournament after we get back from STL and I was seriously considering do it. Then I remembered that Dr. Riew might want me to have the spinal tap while we are in STL and now that my left hand is going numb, it's not the right time to compete. I'm still shooting in my yard and weight training, just very carefully. Shooting is still a great outlet for me to take my mind off things.
I should have blood work results at the end of next week. Until then...