Well do I have the answers I was praying for? Not really. Am I getting closer? I think so.
After a nearly 2 hour appointment with the Parkinson's nurse followed by an appointment with the Movement Disorder Neurologist (who were both great) I am still somewhat in limbo.
The Doctor said I do show signs of Parkinson's Disease but it's still early. He doesn't want to label me with the disease yet incase it still could be something else. There's one other Neurological Disease that he still wants to rule out called Wilson's Disease. It's a condition that can be fatal if undiagnosed and not treated, so kudo's to him if I happen to have the rare thing. It's unlikely as it's a genetic defect that causes your body to store too much copper instead of excreting it. It can cause liver disease and neurological conditions including symptoms of Parkinson's. I had never heard of it before. In doing some research I do have probably about half of the symptoms of the disease so it's still a possibility. It would mean that both of my parents would have to have been a carrier of this bad gene in order for me to have gotten the disease. It's therefore a long shot but definitely worth checking into especially since if treated it's the only such Neurological Disease that will not progress any further. So I'm off to my family Doctor tomorrow for blood work and to start a 24 hour urine collection test to see if that may be the culprit of my issues.
That aside he said I'm not showing much rigidity and stiffness which is typical of Parkinson's however from my interview realizes that I'm experiencing it myself during certain times. Particularly if I sit for long periods of time etc... And therefore tomorrow I start treatment of Levodopa which is a drug used to treat Parkinson's. It helps your brain produce Dopamine which in PD is something your brain stops producing and therefore PD arises. It's a complicated set of instructions on dosing slowly over the course of 6-8 weeks to get to the full dose. If after I get to the full dose and within a few weeks of being at that level I start to feel better then it is another step in diagnosing PD. Seems like a strange course of action to treat someone for a disease they are not diagnosed with in order to diagnose it. I asked the nurse if this is common and she said that not always but sometimes in younger patients this is a method they use when it's early on.
So that adds some confusion to my thought process. I long for an explanation of what's been happening to my body, why it has slowly been getting worse and getting harder to do simple tasks. To find a way to help these tasks become easier and to feel better. However I'm now in a place where I don't know what to hope for. Do I pray the medication works so that I get the relief I so want and in turn determine that I do in fact have the dreaded PD? Or do I pray that it does not work, excluding the potential of the scary disease but still feeling awful and still with no answers? The thoughts of being in limbo for much longer are just as scary as a scary diagnosis. So I'm just not sure how I feel about all of it. Hopeful that maybe it'll be Wilson's Disease still and all be over. I guess I'll know that in a week or so. If that's negative then I just have to do this treatment plan and be patient. Let it all take it's course and figure itself out I guess as it's all out of my control.
So it looks like I shall spend the better part of the summer treating something I ay or may not have and shall yet again wait impatiently for the next appointment, I go back to Saint John again September 19th. That will be 14.5 months after my initial symptoms hit and 13.5 months since I had to stop working,
Only time will tell now and I must just trust there's a plan. This journey is definitely a test to my level of patience. However I will continue to find joy in the days ahead and be grateful that I was ever sent to Saint John as I've gotten father from two appointments there in a 7 week period than I did in close to a year in PEI. So I shall wait....
