Misdiagnosis: My dear friends; My new... - Cure Parkinson's

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Misdiagnosis

12stargate profile image
33 Replies

My dear friends;

My new neurologist again, for the second time, told me I do not have PD.

I had taken my last dose of Sinemet 4 h ago.

What is going on with me is that I have high anxiety, possibly PTSD.

I thought so before diagnosis with PD.

I wake up in the morning, feeling fine.

1/2 h out of bed, the anxiety sets in. My heart starts beating fast, and my vision gets blurry. Then I get dizzy and start stumbling around.

The combination of high anxiety, irregular heartbeat, very low blood pressure has given me symptoms close to PD.

But I don't shake, I don't have stiff muscles, nor any of the other symptoms peculiar to PD. Some of the symptoms I had, I think I had because I thought I had PD.

The neurologist wants to get me off Sinemet, in small doses.

Right now when I feel a panic attack coming, I take 1/2 beta blocker pill, and I am good.

I will be checking in to see how you are all doing.

You are all mighty warriors!! Keep up the good fight :) I have learned a lot about courage from you!!

Much love from Eva G. :)

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12stargate
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33 Replies
laglag profile image
laglag

Please keep in touch & good luck with your new journey! You've been an inspiration to us for sure!

💕Debbie

12stargate profile image
12stargate in reply tolaglag

Thanks, Debbie :)

BUZZ1397 profile image
BUZZ1397

You are nice, kind is easy, help is harder. Praying you find the latter right soon dear. Be well. I'm glad you don't have PD.

Alwarid profile image
Alwarid in reply toBUZZ1397

Take care.nice to read all the Posts

12stargate profile image
12stargate

BUZZ1397

Thank you so much.

The new diagnosis, which I think is PTSD combined with an irregular heartbeat and low blood pressure, has its own challenges.

Much kindness from Eva :)

parkie13 profile image
parkie13 in reply to12stargate

but you can do it. Have you tried the tapping, dr. Mercola gives directions for it

parkie13 profile image
parkie13

I'm so happy for you. Good luck. Mary

Catlou profile image
Catlou

Good Luck! You are very lucky. I keep telling myself "I will wakeup tomorrow and my PD will be gone. No luck so far.

Jwolfman614 profile image
Jwolfman614 in reply toCatlou

Yeah, Catlou. I know what that's like to think this is all a dream. I do the same thing each morning about having broken my neck in a fall five months ago. And then I try turning my head! Nope, not a dream yet!

-John

Enidah profile image
Enidah

Eva, thank you for that quote. It is wonderfully succinct and true. All the best wishes, and yes, keep checking in.

Beckey profile image
Beckey

That is wonderful news. Stay in touch, Eva! You are a priceless member of this group to me.

DEAT profile image
DEAT

So happy for you Eva, although you still have health issues, not having PD must feel wonderful.

You have blessed us all with your beautiful nature.

With the correct diagnosis comes the appropriate treatment. All the best xxxxx

12stargate profile image
12stargate in reply toDEAT

DEAT

It does feel wonderful to not have PD!! Like a big cloak fell off of me.Thank you.

I wish you all could have this experience!!

Voller profile image
Voller in reply toDEAT

Wow

That's great news

Wish you well on your journey

12stargate profile image
12stargate in reply toVoller

Voller

Thank you 😊

snorre profile image
snorre

May I ask you how you get the new diagnose?

A kind of test?

Reason for asking is that i am not sure if I have PD myself.

All the best Eva

12stargate profile image
12stargate in reply tosnorre

snorre

My new neurologist simply gave me the standard test for PD, and did not see PD symptoms! I did not even ask him to check to see if I really had PD. He just ran the test because I was a new patient for him. I left my old neurologist because I did not like her.

So it was actually a second opinion.

Maybe you should have it checked out too.

Thank you :)

Jwolfman614 profile image
Jwolfman614 in reply to12stargate

Congratulations! I'm so happy for you, 12stargate!

Yea! Yea!

-John

12stargate profile image
12stargate in reply toJwolfman614

Jwolfman614

Thanks a million John.

I am considering suing the doc who

misdiagnosed me!

andrehypnotic profile image
andrehypnotic in reply to12stargate

What is the standard test for PD?

I was diagnosed with PD in May 2017.

Up to now I have not taken any medications for PD.

I just have a feeling my diagnosis was wrong?

I do suffer from anxiety,depression and stress!!

Good luck with your new life.

Salladay profile image
Salladay

Wow this sounds a lot like me. Best of luck to you. Please keep us posted

hopedope profile image
hopedope

I'm happy for you too. It's wonderful news for you.

wifeofparky profile image
wifeofparky

Has anyone given you a formal PTSD diagnosis? There are medications to help with the symptoms along with therapy. Best of luck to you. I had PTSD after my husband's death. I took Cymbalta for approximately one year. After weaning off under my doctor's supervision, I use Essential oils to deal with my occasional anxiety.

gcorrell profile image
gcorrell

You are not alone. Depending on the data source, initial diagnoses of PD are wrong over 30% of the time, and on autopsy over 40% of PD diagnoses are wrong. Essential Tremor, especially a mild case, is often the cause of tremor. I too was misdiagnosed, yet was on all the drugs for years so now have tardive tremors and gait issues. Keep track of that, too, if you were on the drugs more than a year.

I now have tremors (tentatively re-diagnosed as ET), dyskinesia/dystonia/all-the-"ias", Hypomania, and severe PTSD.

Permit me to *strongly* recommend "The Body Keeps the Score" by Bessel van der Kolk. Simply the best book available about PTSD, by the smartest guy working with PTSD. It changes lives.

12stargate profile image
12stargate in reply togcorrell

gcorrell

Thank you so much for the referral to the book "The body keeps score." I got it already and it has raving reviews. I think this should be 'a must read' for everyone with PD.

Chicafromchitown profile image
Chicafromchitown in reply togcorrell

gcorrell

Can I ask what meds were you on?

gcorrell profile image
gcorrell in reply toChicafromchitown

Sinemet, Mirapex, Azilect, EmSam patch, others

imshakydad profile image
imshakydad

sounds promising - though as u say ur present condition is not without its own challenges! best of luck and good health to u! thx for ur contributions and comments to date! cheers rk

Quipu profile image
Quipu

Great news, wish you all the best!!!

TheresaCurley profile image
TheresaCurley

This is great news. Take care.

Hikoi profile image
Hikoi

This is wonderful but also a challenge Eva. Hope the new focus will give you much better relief. Go well Eva.

12stargate profile image
12stargate

Thank you so much to all of you for your wonderful, warm and kind words!!

I strongly recommend the book "The body keeps score".

Love and hugs from Eva :)

jeanette2372 profile image
jeanette2372

Huge news! All the best for the future! So happy for you. :-)

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