Quote:
Originally Posted by BreezyRacer
I am "just" self diagnosing. I cannot find a good reason to go get a label put upon me at a time when it will do me no good. I know from your previous responses to my posts that you think I am a "faker" .. or whatever.
The fact is that a diagnosis of PD is highly subjective, given that PD seems to be a wide range of symptoms. Just for the record, I do not relish having PD in the least. There aren't any single neurological diagnosis' that fit exactly, and thus it seems you are pushed into a diagnosis of PD.
I have restless legs (diagnosed), tremor (much worse when under stress), lost my ability to smell, difficulty focusing my eyes, declining balance, ED, and some recent years of depression. I stuttered as a child as well.
I have NOT had nightmares, dementia, shuffling gait, nor constipation. Though I've had a mild tremor for over a decade it could be incidental, or at least I thought so till I found my left hand shaking uncontrollably about 1-2" while in my lap a week or so while under stress. I think I'm early in the process and as I stated above I'm gonna do everything I can to address it early.
It's entirely possible that I have a B vitamin absorption dysfunction, especially given the way I've reacted to B2 and B1 in high doses. Great if that's the case though as per the study referenced in post 1, ALL of the PD patients in that study were found to be B deficient. So is that a flag for PD? Who knows? Neuros don't even test for that stuff. I'm focusing on dealing with my symptoms and hope that doing so will keep me far away from canes, walkers, wheelchairs, and rest homes.
What was your first clues about your PD? I'm assuming that you have a diagnosis ..
|
i was diagnosed by happenstance, i didn't nor did anyone i knew have any suspicion that i had pd. i saw a friend who was an orthopedic surgeon about a problem i had with my right hand, i noticed i couldn't move my fingers as fast when cleaning my hard contact lenses. he sent me to a MDS who diagnosed pd. what i did with that diagnosis was up to me, nobody forced me to take meds, etc. in hindsight i had symptoms pointing to pd, frozen shoulder and not swinging my right arm when running. i was playing on a men's soccer team then and holding my own but occasionally lost my balance which was so unexpected other players would laugh cuz it looked so odd.
the MDS noticed some other slight pd symptoms such as stiffness in my right shoulder/arm and dragging my right foot a little, he pointed out my the sole on my right shoe was more worn than my left shoe. i also received an MRI to rule out other possible medical conditions.
I made that comment because I think it's important readers know you may not have pd. It's that simple. I appreciate your honesty, it would be simple for you to just say you have been diagnosed. With a diagnosis you could qualify for clinical trials, there might be some personal benefit to you and to others. There are biomarker trials where they just measure your progress and compare to biomarkers. And you never know, there might be some super duper potential cure phase 1 trial that you might want to get into that filled up before you could get that "official" diagnosis.
Also, believe it or not, some people get substantial relief from pd drugs. Imagine that.