I had gone through the ups and downs of “getting close” to a diagnosis and then discovering that it was not the correct one. While it was aggravating when it was discovered that I STILL did not have a proper diagnosis… it was a colossal relief at times. Some of the possible conclusions were: Lupus, Fibromyalgia, Multiple Sclerosis, Muscular Dystrophy, Peripheral Neuropathy, a brain tumor, or simply “just in my head”.
Because of my age, Parkinson’s was never even mentioned until my neurologist was at a loss for what it could be and then it just hit him that it could be Early Onset Parkinson’s and he was correct! After a couple of weeks on Sinemet it was clear that my issues were indeed Parkinson’s related.
I evidently also have another “neurological issue” that has not been diagnosed, yet. My neurologist wanted to address the Parkinson’s first and has talked about sending me to a specific specialist in San Francisco. My internal medicine doctor still thinks (along with two other previous doctors over the last 15 years) that I have Lupus, too. He says that I could be one of the very rare people who test negative, but actually have it. Leave it to me to be unique! lol
My symptoms are much better when I have not missed a dosage and am not sick and/or stressed. If I am sick or stressed, I might as well have taken a placebo, because it basically nullifies the effects of the medication in my system for some reason.
My Parkinson’s Symptoms:
I get shooting pain going down my legs and into my feet, especially in the late afternoon or evening.
I still have issues from time to time with a strong energy in my brain. I wrote a whole post about this here.
My feet were always numb (and often my fingers, too). This is much better now that I am on the Sinemet, but this medication is not supposed to help with this. It is also not considered a symptom of Parkinson’s. Regardless, I am happy that it does for me. I still have this symptom when my medication isn’t working for me (as stated earlier). When it happens, it feels like when a limb is just starting to have some feeling again. That painful part right before it gets better…. but it is constantly at that level.
All of that said… I think that I am doing rather well. I do not think that it has progressed much, which is a good thing! I believe a lot of it has to do with my attitude. I have also gone gluten free (which some people believe has really helped their Parkinson’s, especially Early Onset people). While Parkinson’s has slowed me down a bit, it hasn’t really changed my goals.