Trouble diagnosing Parkinson's or other condition

As I understand it - it is not unusual to take multiple specialists and time to diagnose someone with Parkinsons or one of 2 or 3 similar neurodegenerative diseases in the early stages. There are no blood tests to help differentiate the problem and some people take decades to develop full blown symptoms. It is discouraging for clinician and patient alike. I've been acting out my dreams for years before coming to understand this was REM sleep behavior disorder with up to 80 to 90 % of people who experience it developing Parkinsons, Multiple Systems Atrophy or Lewy Body Dementia over time. It took over 2 decades before fine motor skills and gait disturbances became a problem. Still no significant tremor. Clonazepam helps with sleep/dream problems and Midodrine helps with orthodontic hypotension, with q 6 month neurology followup for now. GI issues are a persistent problem, but manageable with Miralax nightly and Senna tea every 2 weeks if needed. Severe GERD treated with Voquenza with improvement. Ph yeah, regular exercise is a must. This process "ain't for sissies" ,but can be improved.

With the autonomic symptoms you are experiencing have you been offered testing in an autonomic lab? The dysautonomia can develop years before we have motor symptoms causing obvious
movement signs.
The two most helpful tests are
the SynOne test biopsies of skin
and the DAT brain scan to rule out
neurodegenerative disease or offer more specific diagnosis if you need to know with more certainty.

@seniormed
My neurologist said that he did not think a biopsy looking for alpha synuclein would change his plan right now since he doesn't see the need to start other meds until my symptoms become more pronounced. There is a part of me that finds a confirmatory bx scary - even though I'm a retired Acute Care NP - it's very different being on this side of the equation.

I was anxious to have testing with a family history in two first degree
relatives. My local neurology consultant did not want to pursue autonomic testing. I sense that they may be hesitant to make the diagnosis prematurely.
I was fortunate to get an appointment with the autonomic team at Mayo
Rochester after a 6 month wait.
I choose to know as I am 78 and want to optimize my planning for the end game.

@seniormed
Thank you so much for the valuable input. My husband and I are planning for the future by getting on the waiting list for a senior living community with full service as needed if things continue to progress. I am 74 years old and he is 81 - everyone tells us "don't wait too long" to prepare and we are heeding that advice. My next neuro follow-up is in January and I'm anxious to get his opinion on my current status. Fine motor skills are deteriorating some and my gait issues are more pronounced - still no significant tremor. We'll see.

Many, many folks in this support group have had similar experiences (myself included). Here's the deal: 1. There is currently not yet a test that can definitively determine whether a person has Parkinson's Disease. Except an autopsy (which most of us are disinclined to pursue, at least not yet). So at the moment, the doctors must rely on a combination of tests and then infer a diagnosis through an assortment of tests and observations. What makes diagnosis of PD so difficulr is (a)There are a number of symptoms that folks with Parkinsons have. (e..g., no sense of smell, constipation, tremors,etc.) BUT each of the symptoms can also be caused by a wide aray of different things. So one individual could have a number of these symptoms but just having symptoms CONSISTENT with PD doesn't mean that the person HAS PD. because there are several diseases that mimic P.D. 2. Two patients can have the same symptoms BUT person A can have PD while person B doesn't. B's symptoms can be caused by many other diseases. If the doctor misdiagnoses Patient B as having PD when he doesn't, then he will give Patient B the same treatment plan as he gives to patient A. This means that Patient B will not receive the right treatment plan for his disease, which can create a big problem for him - wrong diagnosis=wrong treatment plan.
Further, PD can manifest itself in many differrnt ways. There are a zillion different symptoms of PD. Patient A may have one set of Symptoms ( say, symptoms #1,3,5,7 and #9)
while patient B has symptoms #2, #4, #6, #8, and #10. They don't share a single symptom BUT they both have P D.
In addition, 2 patients may have exactly the same configuration of symptoms ,but neither of them have PD. Patient A's symptoms may be caused by a single non- PD disease while patient B 's symptoms are caused by a combination of different diseases which he has been cursed with, but none of them are caused by PD. Bottom line : PRESENCE of EVERY PD symptom associated with PD doesn't necessarialy mean a patient HAS PD, and a patient with ABSENCE of a single PD symptom does NOT mean the ABSENCE OF PD.
Further, many symptoms are not considered symptoms of anything and many folks may just assume that they're meaningless. I never considerd my REM disorder a big problem and eould never have dreamed that it was worth mentioning to my doctor. just as I would never have dreamed that the fact that I was always the coldest one in the room nor that my fingernails broke so easily would be worth nentioning to my doctor. But they are classic symptoms of low thyroid (which was discovered by the blood test I had in the hospital ER where my work colleague took me after I fainted. Given all of these factors, it's flipping astounding that ANY cases of PD are disgnosed. It is my understanding that there is a blood test that might provide a definitive diagnosis, but it's not ready for prime time yet. Success here would be an ENORMOUS step! Not only would it enable folks with PD to get treated earlier, but just inagine the cost of the resources to get a diagnosis! My experience is similar to so many others Over a period of 3 years, ( one year of that time I was totally bed-ridden) I went through the Neurology depts at 3 hospitals where I spent a total of 100 days altogether), and had all the tests known to the Western world -'CAT scans, spinal taps,MRIs, PDQ's , SOBs, WTF's, and LSMFTs (you must be 2 days older than dirt to recognize this acronym), and, most importantly, my husband endured so much stress (when this time in our lives should be stress-free) and missed a lot of time I could have spent w.ith my grandkids, who took the liberty of growing up while I was otherwise occupied. Wish I could give you infornation that could materially improve your quest for a diagnosis. (But I would encourage you to ask for a test that's inexpensive, virtually pain- free, and quick (about 90 minutes total) and could provide an important result.- Ask you doctor to test how you respond to l-dopa . Basically they do the normal pull, push, hitting your knees with a rubber hammer tests, then give you an l-dopa pill, and come back in an hour. Then they see what you can do. This test saved my life by getting my diagnosis, and hence treatment.)
The best I can do is wish you a speedy diagnosis and let you know that you aren't the Lone Ranger here, so Hi- Ho, Silver, and off you go! ( also need to be older than dirt to get this reference. 😉