Possible Parkinson’s Disease Misdiagnosis?

I can understand why you are concerned. I spent a couple of years goting through the labrynth of textins various things that didn't pan out. -- POTS, high BP, High Chloesterrol/blocked blood vessels, sthman, COPD,heart issues, - all the common things that could cause my symptom, -- it was a single symptom- Iwas procoundly and progressively fatigued, etting worse every day. I had no disstinct Parkinsons symptoms. After my prpimary care doctor had done all he could do and ruled out the other facors (I was found to have almost everytning on the list, but very innocuous cases that were remedied by meds and all systems ere 'go' --sill nothing to declare a PD diagnosis. Since there is also not yet a definitive diagnosis for PD like there is for other diseases, the d octors mus reach the diagnosis in an unweildy process, i.e., When there are tests for a diseace that could present islect with symptoms consistent with PD AND that have a a reliable test, they conduct those tests to rule our a mimicing disease. This iis very important, becuase if you had one of these mimicindg diseases and they treated you for Parkindsons, youwouldn't get the best treatment for youratual disease. Misdiagnosis = wwrong treatment plan. Nobody wants that to happen. So aafter they rule out the common things (doctors are taught to first look for horses rather than zebra for 2 reasons: 1 is that they are more likely to find the common t hing li, diabetes, so they can get the corredt treatment plan and the patient will be helped. If they look for zebras first, then far more resources are spesnt of finding the source of the patient's problems and yielding fewer solutions for fewer patients. I had thought I must have been a pecial case, because surely no one else wwent several years through various paths and my path included gething the full dsuite ofd iagnostic from 3 hospitals, and still didn't fit all the requirrements for qualifying as PD. Once I began participating in the support group, I realized that I was not the lone ranger. lots of folks had similar experiences, and it's because this disease manifests itself in so many different ways. Some folks hae teremors, I didn't; some p eople were hagin lots of falls (I had falls too, but only one per year) more an indication of not paying full attention to what was g oing on in the my e Invironment. so many of the things thatcould be PD, but could also be reasongably attibuted to other things. diagnosisng PD is so hard not only because othere's not yet a definnitive test. (dogs can be taught to identify it by smell, - so maybe they should just let the dogs do it. Imagine what your insurance companywold have to say about that test. I would guess that if you assembled 1000 folks who had been diagnosed with PD, and everyone provided a lisst of theirsymptoms and a list of the tests that they had had., no 2 people would have the sme list. The list o tessts maybe the most shared set of similarities but if you based it only on symptoms, there are somany subtle sumptoms that may be consistent with PD BUT can be attributed to something not PD related.folks don't notice like losing your sense of smell. .(Maybe your husband's flatulence has gotten less potent because he's changed his diet, ot maybe you've lost your sense of smellI. Are you going to go to the doctor and ask why your husbands flatulence no longer smells? robably not.f there were 100 symptoms that COULD be PD OR they could be some other disease, If you think you ave a fever, you can take your temperature and confirm whether it's you or the room just got hotter Are there incompetent doctors. Most certainly. Do capable doctors sometimes interpret the symptoms and test a bit differently from one anohter and come up with different answers, of course they can with this mercurial disease. I don'y intend to be dismissive of your concerns, ut given the chameleon-likenature of this disease, even the most skillful, best-educated and trained doctors whose IQ approaches a zillion, can make mistakes in diagnosing this disease. Believe me, I know how frusstrating i and confusing it can be, as can most of the golks in the support group. I'm probably not the only one who strongly considered slipping the mortal coils as I got sicker and sicker ad sicker with no identifiable cause and cwith no relief in sight. I was persuaded to give it one more try, and I figured I had nothing to lose and as a courtesy to my family, I would gut this out a bit longer.I wouldn't want them to ponder "what if she had tried that one ast time...) And it paid off. I couldn't deny them another try. Kinda glad I did. give it that last shot.I've been unspeakabley lucky to have hads so many competent, ccaring health progessionals during my entire PD maze I even have primary care doctors hwo make home visits. (and I live 1 block from their ofices so that makes it easy on them to pop in at their convenience. And I have th ebesst husband on the planet. and a great litle family. . I am so lulcky in so many ways. But if you don't feel comfortable with the care you've received, then by all means seek another doctor. Just know that this is a devilshly difficiut disease to diagnose (for now) There are some other tests that are awailable now that some trust as more definitive, so check into those and if you're not confortavle with your neurologist, find someone you are comfortable with. This is not a disease where you should t olerate care that you feel to be inadequate. just make sure that the diagnosis process may be inadequate, but that's the case for everyone. When a test considered to be definitive comes out as standard, itwill be definitIt w ould be interesting to see how it turns our - how many diagnoses done the old fashioned way, were right. I have the sense(jusst based on what I feel -no statisticss or actual facts but I feel that most cases will have been diagnosed correctily - Good doctors have a 6th sense about this stuff.and I think they get it right most of the time

Love your handle. Spent years rollin' that rock. Good message, building my routine as pain permits.

Exercise that keeps us in reasonably optimal form in balance, strength, flexibility and heart health is critical to keep off PD; even elite athletes in non-contact sports invite PD more if not active. Of course it would vary from person to person and therefore YOUR "optimal" is what You know-and-want.

Do I want an optimally physically healthy body?
Well everything we do in life costs Time, a fixed asset. I am therefore satisfied with a less-than-optimal body because I want to spend my life on matters I find worth pursuing. In my 80s, I have my choices different than when I was a different person -- in my preferences. You get the idea! Bon voyage!

@sjde53 Thank you for the information. I will definitely talk to neurologist on September 1 to do one of those test!

Not at the moment ..
thanks!!😊

Hello @amawdee
I see this is your first post on Mayo Clinic Connect. Would you like to share something about PD or do you have any questions?

@hopeful33250

@theirishfolk
I do understand your concerns. My PD symptoms are somewhat similar in that I have no tremors; however, I do have balance and gait problems when I am fatigued, especially in the late afternoon and evening. Keeping active is important and should help lessen symptoms and keep you mobile.

I am also involved in an exercise center devoted exclusively to Parkinson's patients, and I always see people far more advanced in this disease, and it makes me wonder when my symptoms may worsen.

I suppose it is important to be grateful for the place where we are and to enjoy life to the fullest. You mention taking a boxing class. Are you involved in any other exercise programs?

@hopeful33250 Hello! and thank you for your response to the links to further information. It is a situaton where I keep waiting for PD to "happen". I have no tremors. My gait is an 8 on a sale from 1 - 10. I do have an issue with balance, but will be 79 this week. But none of the "internal" symptoms I have read about have occurred. Not on medication. No real problems with fine motor tasks, buttons etc . .
So, I really don't even have much in the way of Parkinsonisms. Please don't think I diminish those with significant issues with PD: I am in a boxing class with men and women who are significantly advanced in their sympoms. I see the loads they carry, I guess I just wonder when my turn is.

Hello @theirishfolk,

Welcome! I see that this is your first post in the PD support group. You are asking good questions about a PD diagnosis. Here is some information from the Mayo Clinic website about the symptoms, causes, diagnosis, and treatment of PD: https://www.mayoclinic.org/diseases-conditions/parkinsons-disease/symptoms-causes/syc-20376055

The Davis Phinney Foundation website is a great place to find information related to Parkinson's. I did a search and found some information about the DAT Scan. Here is the link: https://davisphinneyfoundation.org/blog/datscan/. Not all medical facilities offer this type of test, and many of us are diagnosed by observation and tests to rule out other neurological issues.

You mentioned that you have mild symptoms. Could you share what those symptoms are? Are you currently taking PD medications, and if so, have they helped?