Second opinion

[dmariel]

I went to another neurologist for a second opinion because i feel i am not really having any symptoms. I also have rheumatoid arthritis. Neuro today doesn't think i have parkinsons after examining me even though i had a positive dat scan. First neurologist said i had parkinson's after having the dat scan. So, i am very confused. Thank you.

[parkie13]

What symptoms did you have the first time when you were diagnosed?

[dmariel in reply to parkie13]

My leg felt funny when i walked, i haven't felt like that in a while though

[parkie13 in reply to dmariel]

I just hope that you don't have it

[dmariel]

Thank you, i do too. But with a positive dat scan, how can i not? Neuro today said she needed to see symptoms and that i didn't have any. So idk

[PNIAuthor60]

What is a "dat scan?"

[Serenity_finaly-1 in reply to PNIAuthor60]

Opposite of dis scan.

[PNIAuthor60 in reply to Serenity_finaly-1]

??? Doesn't help me understand what it is

[Serenity_finaly-1 in reply to PNIAuthor60]

Sorry, just being a wise arse.

[dmariel]

I thought it was to determine if you have pd

[Bailey_Texas]

Dat scans should be used to confirm a diagnosis not make it. Dat scan are rare in the US. They are not a reliable tool for diagnosis.

[dmariel in reply to Bailey_Texas]

Now i am seriously wondering if she thought i said "cat scan" as she asked a few times when i had one...will call there tomorrow

[Bazillion in reply to dmariel]

See my reply

parkinson.org/find-help/blo...

[FMundo in reply to Bailey_Texas]

I agree with Bailey (DATscan should be used to confirm diagnosis) NOT be primary basis. Following my initial diagnosis of Parkinsons using normal neurological tests I went to the Mayo Clinic for a second opinion. They did a DATscan (to confirm). Prior to the scan I had to cease taking carbo/levo meds (which puts dopamine in your brain).

The conclusion was shown to me in images and they could see that there was a diminished (dimmer spot) in my brain on the opposite side of my head than where my tremors were) which is consistent with the way we are wired. They concluded that I had PD.

Normally neurologists look for a "number" its three or four "symptoms" to support a diagnosis of Parkinsons. And the "error rate" (incorrect diagnosis) that you have Parkinsons is 25%. I'm thinking its quite likely you don't have PD. One pretty definitive test is to take carbidopa-levodopa for a day or two and if the tremor symptom goes away you have PD.

[Bazillion]

parkinson.org/find-help/blo...

Above link gives useful info on DAT scan

[jrg54321]

Were both these neurologists movement disorder specialists according to this site?

partnersinparkinsons.org/fi...

[kdmorgan9]

That is confusing - mind boggling. It seems rheumatoid arthritis might seem to mimic PD possibly. Good for you getting a 2nd opinion. Good luck & take care. Did the 1st doc prescribe anything? For myself, I'd consider holding off & trusting 2nd opinion and wait & see if symptoms do occur. How did you feel with each doc? Pray for guidance & understanding.

[dmariel in reply to kdmorgan9]

Hi Kdmorgan,

Yes, so confusing. I am waiting on a call back from the neuro i saw yesterday. I am wondering if she thought i said "cat scan" as she asked a couple of times when i had one?? When in fact i said "dat scan". She had a heavy accent and i was flustered. So, i should know more today.

[dmariel in reply to dmariel]

Oh yeah, the first neuro prescribed cardopa lavadopa 25-250 mg. I never felt it did anything for me so i didn't take it.

[Hidden in reply to dmariel]

The neuro prescribed 25/250 when you had only mild symptoms and had never been on levodopa before? I definitely wouldn't trust them. Usually you would start 25/100.

[Serenity_finaly-1 in reply to dmariel]

That kind of dosage on a virgin stomach should have given you a very upset tummy. So... what did you do to piss the doctor off ?

[kdmorgan9 in reply to dmariel]

waiting with you. I've never heard of dat scan until today here. I need to learn more from other people explaining.

[maharg12 in reply to dmariel]

My MRI was not showing anything specific so I insisted on a DatS.This confirmed PD. Not able to get under NHS and privately costs around £2100. nly taking Rasagiline 1mg daily and feeling good. Of to Italy in week

[Tato]

Something is not right. I would suggest a "third opinion" but with a movement disorder specialist that works in a institution that deals with movement disorder; there are many movement disorder institution in the USA. A movement disorder specialist is a neurologist that has done post 1 or 2 years working only with patient that have abnormal movements. Also remember that PD is a disease with many different signs & symptoms

[kdmorgan9 in reply to Tato]

Sounds like a good suggestion. And I wasn't aware of movement specialists until a year ago.

[dmariel in reply to Tato]

You're right i need to go see the movement disorder specialist...don't even feel like thinking about it right now.

[Tato in reply to dmariel]

If you have a doubt get another opinion. When I was first Dx it was by a gerontologist he referred me to a neurologist who confirmed the Dx; read about the disease and I did not like what I read so got an appointment with a movement disorder specialist at UCI (University of California), for about 30 min. was worked over by 3 MD specialist who concur the Dx. Not happy with the news made an appointment at Loma Linda University (California) where 2 specialist checked me and concur with the Dx. Still not happy but I have accepted that I am a parky, I take my medication and I pray to God for help on how to deal with the disease. All of the doctors that I consulted agreed with the treatment with Sinemet (Carbidopa/Levodopa 25/100) I'm now at 1 1/2 tab 6 - 10 - 2 - 6. None suggested a Scan nor any type of laboratory test. For follow up, for convenience I see the neurologist every 4 - 6 month knowing that I can always go back and see the movement disorder specialists. Pd is a fascinating complex disease.

[dmariel]

I was waiting for dr. to call back today, they never did. Perhaps she expects me to wait til Christmas to talk with her again as that is when my next appointment with her. Cripes

[Hikoi]

Nothing is perfect, In all things there is an element of error and in Dat scans too. There is a small % of false positives. The absolute proof can only be found on autopsy so you may have a 3 rd opinion but how do you know which one is correct in the end. Really all we have to confirm it is time. If your symptoms dont persist it means you dont have pd (though some might claim miracle healing.)

Reading scans aparently takes a great deal of skill, so maybe another opinion on your scan could help.

[dmariel in reply to Hikoi]

Yeah really, the first neuro didn't even show me my scan. He just told me that i have pd...smh

[park_bear in reply to dmariel]

As a patient you are entitled to a copy of the test results you are paying for. Get a copy of that DAT scan. Per FMundo: "The conclusion was shown to me in images and they could see that there was a diminished (dimmer spot) in my brain on the opposite side of my head than where my tremors were) which is consistent with the way we are wired. They concluded that I had PD."

Even if you cannot read it yourself it should be something you give to any other neuro you see for this.

Meanwhile, since time has gone by and you are not having any symptoms that does cast doubt on the PD diagnosis since with PD symptoms do increase over time.

[RobertoOcana in reply to Hikoi]

If you go for a second opinion and they don't agree go for a third and pick 2 out of three

[Cbgs]

Get an MRI

It can show if u have water on the brain

Which would give u PD symptoms

And/or

Look into Parkinsonism

I hope this helps

Be well

C!

[dmariel in reply to Cbgs]

water on the brain? i don't understand. Thank you

[Cbgs in reply to dmariel]

Waterlogged brain region helps scientists gauge damage caused by Parkinson's disease: Research could aid drug development for the condition -- ScienceDaily

sciencedaily.com/releases/2...

[park_bear in reply to Cbgs]

This is wrong and inappropriate advice. This was not the ordinary type of MRI given to patients: "The researchers, ... used a form of MRI that differentiates between water contained in brain cells and "free" water outside of cells. "

[Cbgs in reply to park_bear]

It was just info on how they are able to gauge PD progression

Therefore confirming a patient has PD , no?

[park_bear in reply to Cbgs]

The point is they used a special form of MRI not available to patients. Therefore advising a patient to get an MRI based on this report is in error.

[Cbgs in reply to park_bear]

I'm sry

I didn't understand that this was still part of research and that there are no Clinical applications at this time

[Cbgs]

Also nothing to do with PD

There is a condition of water on the brain

Has PD like symptoms

A simple drain and ur back to normal

[femi17 in reply to Cbgs]

You are right, C.

It's called Normal Pressure Hydrocephalus (NPH)

Excessive fluid accumulates in chambers within the brain called ventricles

This causes wobbly gait and some abnormalities in mental state.

Drainage causes resolution of symptoms, if it's done early enough.

However, a CAT Scan also can pick NPH (not strictly MRI)

Suffice to say that a brain image (CT/MRI) is always helpful in all Parkinsonism as the symptoms can be caused by structural brain damage (Secondary Parkinsonism)

Cheers