Ep. 74 The Long Wait For A Parkinson’s Diagnosis

In this video, I talk about my long journey to getting a Parkinson’s diagnosis.
/ jeremymac76
/ jeremymcdonaldmusic

[@shsharrell9267]

There's no telling how many people you helped with this video. I think most parkinson's patients can certainly identify with this. It sounds crazy to be relieved with a parkinson's diagnosis, but I get it. Finally a reason why you feel so bad and so many things going wrong. Thanks Jeremy. A really good video. Sherry, Springfield MO

[@JeremyMcdonald]

Thx for the compliment, Sherry! Hope you’re doing well.

[@brucemurdoch6713]

You're right on it, it took neurology 3 years to diagnose me, told me I'd had a small stroke, Oh whatever happens we're in the shit, life will never be the same!!

[@JeremyMcdonald]

Life is not getting any easier for us. That’s for sure! Thx, Bruce.😎

[@Kerry-xx7gt]

Hi Jeremy, I have been watching your videos recently and you are quite an amazing person. Thank you for what you are doing on KZbin and spreading the word about your condition of Parkinsons. My husband has had four strokes and was diagnosed in 2021 with vascular dementia, but in the past few months he started falling and along with a resting tremor in his right hand and pilling in his left hand I got him seen by a doctor in the Frailty Clinic who thinks there is a possibility he has Parkinsons disease or his symptoms are side effect of his medication. After watching this video, you have mentioned several other things that you had ie pain in your shoulder that my husband has suffered from for nearly a year. I hope we don’t have a diagnosis of PD but at least we should get to know by the end of this year after my husband has got his awaited appointment for a scan which will show if his Dopamine levels are reduced. Please keep doing your videos as you have certainly helped me.

[@JeremyMcdonald]

It means so much to me to hear that my story is helping others! Best wishes for you and your husband. I hope you get some answers.😊

[@elizabetholiviaclark]

I know I've had it for several years, but there are factors such as my taking Mirapex for rls that might have been masking symptoms. My neuro diagnosed me, too, and I think the world of her. Coming away from the wound management problem I have been known to whine to you about (which is so much better), I am now noticing that some Parkinson's symptoms are a little more pronounced. I was so focused on one problem, I didn't even notice the other. I'm wondering what it would be if I weren't taking Mirapex. I know it's not a nice waiting game for those hoping for a dx.

[@JeremyMcdonald]

Tom Petty has a song that says “ the waiting is the hardest part”. So true! Thx, Betty!😊

[@RobbofromCronulla]

I don't think it's possible to diagnose PD on the first visit to the Neuro' or Movement Disorder Specialist. I presented with my first symptoms in 2005 (twitchy digits, right leg dragging & not swinging my arms (all the classics) ). Your neurologist really needs to see a progression in the disease before trialling the meds and then giving a diagnosis. My first visit to the Neurologist was 2 years after my father died in 2003, he'd had PD for 18 years before the heart attack. You can die with Parkinsons but not from it. So I was familiar with the symptoms that he had exhibited & of course I self diagnosed. Anyway it took 8 years from my first symptoms to a diagnosis. I'm sure I could have been diagnosed sooner if I had pushed for it. I knew I had it but just didn't want to hear it. Like it's not real without the diagnosis. Love your work.

[@JeremyMcdonald]

Thx, Robby! I agree that a one visit diagnosis is just not possible, as the disease takes a while to fully manifest. And the spectrum of symptoms varies greatly from individual to individual.

[@adawehi55]

Another fine video, sir. The orthopedic surgeon wanted to operate on my foot for bone spurs in 2020. I declined because of the pain and stiffness in the rest of my body. Gastroenterologist stretched my throat during endoscopy. I was hoarse. After 30+ years seeing psychiatrists, I was discharged this summer. Over the years, I’ve been depressed and anxious. During that time, I got an MA in Counseling and became a therapist. I had to retire early due to spasms and leg pain. I,too, was relieved when I was diagnosed with PD via DATScan. Keep the videos coming. BTW I used to live in ST. Charles. Have a friend or two in the STL area. Sorry this is so long. Karen

[@JeremyMcdonald]

No need to apologize, Karen. I love reading people’s posts! How long ago did you live here?

[@adawehi55]

@@JeremyMcdonald We lived there from 1996 until 1999. I moved back to SC after my husband passed away. He was 43. I loved that area.

[@JeremyMcdonald]

@@adawehi55 Wow! Your husband was so young! And St. Charles is indeed a great place to live.😊

[@stewea57]

It’s amazing I had the same road to diagnosis as you. I actually figured out what I had in researching symptoms online before I was diagnosed by my neurologist. On a side note I have my first of two DBS surgeries Friday with the second next Friday. Fingers crossed 🤞

[@JeremyMcdonald]

Good luck on your surgery! Keep me updated.🙂

[@joec2174]

Mini stroke, essential tremors, pinched nerve, etc etc.. it’s PD !! I know the relief in finally knowing and then knowing how to deal with it. B vitamins help as well as rest and eating right. Good shoes and staying positive helps too. God bless.

[@JeremyMcdonald]

Good shoes and a definite must have! Thx!

[@MikeMercury]

do you experience fatigue actually ?

[@JeremyMcdonald]

Daily, bro!

[@wafflesrus6404]

Ugh, the struggle is real to get a diagnosis. I’m not diagnosed yet but truly feel I have Parkinson’s. All the signs and symptoms point to it, but my MDS doesn’t want to diagnose because of age. I’m 39. Continuing the search for a doctor to work with me while I still work as an operating engineer, most days are a struggle. Stay positive as possible out there in internet land!

[@JeremyMcdonald]

I remember that feeling. I struggled at work for several years before I was diagnosed. Hopefully you get answers soon. Thx for watching!

[@isaaclee3322]

I’m going through the process right now… I really not sure if I have it but I did a DATScan and it came back negative. But I think having a positive DATScan will really show the likely hood it could be it and really consider it as a potential.

[@wafflesrus6404]

@@isaaclee3322 my DaTscan came back negative too. Went to get another opinion and neurologists asked if anyone ever said it was “psychological.” Aka all in my head. I was so pissed. I’ve seen people say they’ve had that experience but never thought I would. I’ve read DaTScans coming back negative then later being positive. Anything with the brain seems to be complicated and confusing. Keep the faith!

[@isaaclee3322]

@@wafflesrus6404 was your Z-score also in the negative range?

[@wafflesrus6404]

@@isaaclee3322 im not sure they gave me a z-score. Would it be on DaTscan results?

[@ParkinsonsWigglesProject]

Great video! It's a tough process to go through. I started with a podiatrist because I couldn't wiggle my toes and he said you need to see a neurologist. Especially when under 40 it can be really hard to find the answer, and for women, but as we know, you can. Thanks as always for sharing!!

[@JeremyMcdonald]

You’re welcome! 😎

[@SDWP]

Ha ha ha! I thought you said the other D word! Glad you made it clear. Great advice/info. This is definitely gonna help people.

[@JeremyMcdonald]

I’m glad you stuck around till the end!😂

[@jackmcloraine5354]

Jeremy, I went a long time wondering why my left hand was stiff and felt I had brain fog when out walking. I’d stare at things like it wasn’t registering what I was looking at. It was walking the dog in the cold when my left arm started shaking that I knew something was wrong. I went to my GP who sent me to see a neurologist. Within a few days I had a Datscan and it was confirmed. That was nearly two years ago now. So, though I didn’t have to wait long to be diagnosed, the symptoms while I am still working is starting to become difficult, and not the least of which is my inability to handle stress I used to take for granted. I just attended a sales meeting for three days and realized I cannot handle it much longer. Anxiety is real.

[@JeremyMcdonald]

Wow! That’s got to be overwhelming to still have to go to work when you feel like that. I remember the days I used to have trying to hide my symptoms. Too much stress!

[@johnp.2614]

Great video. Hopefully with these new tests supposedly coming out PD will become easier to diagnose.

[@JeremyMcdonald]

I hope so too! Thx, John.

[@GoProGoalieUzi]

It actually sounded like ddd..dd D%^£

[@JeremyMcdonald]

Dirty mind!😂

[@alittlebitshaky]

I’d broken my right wrist and the next few years after, it was troublesome, achy and annoying weak. My kids laughed when I poured the milk….my right hand was “a little bit shaky”. 😜 I started training for a long distance charity walk and that’s when I really noticed my right arm just didn’t swing. Being a nurse, I self-diagnosed but my GP wasn’t convinced. Within three months I was sitting in the neurologist’s office wishing I wasn’t so clever and that my GP was right. Damn it!

[@JeremyMcdonald]

My symptoms led me to webmd where Parkinson’s was one of the only diseases that matched what I was experiencing. How long was it after you broke your wrist that you got your diagnosis?

[@alittlebitshaky]

@@JeremyMcdonald About 6 years. But I wasn’t acutely my awareness of the PD symptoms

[@alittlebitshaky]

Oops….that should read…. I wasn’t acutely aware of the PD symptoms until a year before my diagnosis.

[@JeremyMcdonald]

@@alittlebitshaky That’s interesting. I feel like I was aware that something was wrong for several years.

[@alittlebitshaky]

@@JeremyMcdonald I gradually lost my sense of smell a good while before diagnosis and apart from the arm thing there was not much else.

[@MikeMercury]

great video as usual jeremy

[@JeremyMcdonald]

I appreciate that, Mike!😎