Symptoms of PD, seeking answers. Anyone experiencing the same?

Almost everyone who has posted on this Support Group has had a difficult time getting a diagnosis. There is -- so far as I know) a definitive test forbPsrkindon's. ( I have sen an occasional post where soneone mentioned a specific test but I don't recall the name of the test. There are also many duseases that mimic PD, and if a doctor misdiagnoses a patient, he'll prescribr yhe wrong meds, which could impede the right treatment. And in addition to thid, each case of zpD has its own manifestations so , while some patients may have a different set of symptoms. After 3 rounds of duagnostic tests over 3 years, the last doctor tried a last- ditch effort to find a diagnosis. He tried --lgiving me a dose of l-dopa. It did its magic on me. After ruling out a zillion othr co-morbidities ( every one was mild and controlled by low doses of the disease- specific meds, my doctor con cluded -- basd on my response to l-dopa tgat it was PD. You might suggest that you doctor to try it.

Almost everyone who has posted on this Support Group has had a difficult time getting a diagnosis. There is -- so far as I know) a definitive test forbPsrkindon's. ( I have sen an occasional post where soneone mentioned a specific test but I don't recall the name of the test. There are also many duseases that mimic PD, and if a doctor misdiagnoses a patient, he'll prescribr yhe wrong meds, which could impede the right treatment. And in addition to thid, each case of zpD has its own manifestations so , while some patients may have a different set of symptoms. After 3 rounds of duagnostic tests over 3 years, the last doctor tried a last- ditch effort to find a diagnosis. He tried --lgiving me a dose of l-dopa. It did its magic on me. After ruling out a zillion othr co-morbidities ( every one was mild and controlled by low doses of the disease- specific meds, my doctor con cluded -- basd on my response to l-dopa tgat it was PD. You might suggest that you doctor to try it.

@jatonlouise
Would you be willing to share your symptoms? I feel my husband has Parkinson’s. He has the REM sleep behavior, very little smelling ability, constipation, and increasingly complains of stiffness. Hopefully he’ll retire in a year and will be on Medicare. I don’t know if I should push for diagnosis (he’s 66) or wait until he retires.

I have all the same symptoms plus drag right foot smaller steps..along with memory issues..I dont know if waiting to find out and get help i s a good idea..I wish I could have got started earlier with medicine its helping

@tngiMrl103
My husbnd did have Parkinsons and all the symptoms you mentioned above. He and I married in 1960 and he already had the REM sleep disorder. He died at age 80.

@jatonlouise
Would you be willing to share your symptoms? I feel my husband has Parkinson’s. He has the REM sleep behavior, very little smelling ability, constipation, and increasingly complains of stiffness. Hopefully he’ll retire in a year and will be on Medicare. I don’t know if I should push for diagnosis (he’s 66) or wait until he retires.

@jatonlouise
Would you be willing to share your symptoms? I feel my husband has Parkinson’s. He has the REM sleep behavior, very little smelling ability, constipation, and increasingly complains of stiffness. Hopefully he’ll retire in a year and will be on Medicare. I don’t know if I should push for diagnosis (he’s 66) or wait until he retires.

One reaason my PD was hard to diagnose was that my major symptom was
increaslingly horrible fatigue. I had no tremors. Although I fell a couple
of times, the frequency was only once a year. One was particularly bad - I
didn't know I was falling until my face hit the pavement. Fortunately, I
only broke my nose -- a rather largish one--, which saved my teeth and
glasses. I had always been a klutz.

I knew that my sense of smell wasn't as good as my husband's but I never
knew it was anything to be concerned about, (Our brand new house nearly
burned down as a result. We had moved into it on Sunday and the nex morning
my husband and I were leaving for work but he smelled something burning; I
smelled nothing. He found a lamp in our son's room has fallen over and had
started a fire. That was in 1984 and I wasn't diagnosed until 2023.( And I
woukd like ti spologize to all my office mates because I had undoubtedky
been a tad too heavrmy on my perfume because of my lack of smell).

All my life i had been constipated, I had been treated with castor oil,
which was always waiting for me at the bottom of my orange juice every
morning . (I now realize that it was blatently a form of child abuse.)

I had had what I inow know to have been REM sleeep disorder. As a young
bride ( in 2966) i had dreamed that my new husband had cheated on me and it
took me 3 days to stop being angry with him.) I also did things in my
sleep, like I once sat up in bed, pulled my poor husband's pillow from
under his head and thew it across the room. More recently (2021),I was
dreaming that someone was trying to.grab my baby (who on real life was 44
years old ). As he always did when I was spouting gibberish in my dream
state anh thrashing about our bed, m husband grabbed my arm to try to wake
me up. I, of course thought it was the man trying to steal my precious
child and tryed to bite his hand. He was able to break away before I could
bite him. (Despite all this, that dear man is still with me, after 62 years
of putting up all my nonsense.)

I never considered that any of these symptoms to trport to my doctors and
none of them asked whether I was rxperienced these things brcause none of
us knewbthar they were symptoms., but rather just qwerky things that some
some people did.

I, too, would be woried about how a PD diagnosis might affect getting on
new insurance. But I know absolutely nothing sbout how any of it actually
works. (I'm an Anerican citizen but live in Germany, so I have no personal
experience with how things work in the US)There may be people at a senior
center or at AARP or at Meals on Wheels who work with senior citizens and
are kowledgable about these things or could refer you to some one who
does.maybe your state or city governmenst have departments for helping
senior citizens might know something about such things.

I am not a health care professional, so in terms of whether you husband has
PD or not all I can tell you is that hus symptoms are cobsistent with mine
and I have PD. However, you should be aware thst there are seversl diseases
that mimic PD and if your husband is misdiagnosed with P D, then he may not
get the correct treatment for whatever he has. That's why they are so
careful about it. Knowing what I di niw there is one thing I would do if
zi were in your situation, which is to ask the doctor to see how your
husband responds to L-dopa. At minimum, a failure to respond to l-dopa,
them that might rule out PD, which could help point to one of the
diseases that mimic PD and hence get a dianosis and a treatment plan.

Hope this helps a bit.

Have a lively day!