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Janice Higgins

Moved from MA to VA - new doc questioning dx of PD.

5 posts in this topic

Hi - I am a 47 year old female living with YOPD for 12 years.   I moved from MA to VA 15 months ago.  I was diagnosed with YOPD at age 34 in 2004.  It was a pretty simple diagnosis process.  I presented with tremor in my right hand and general stiffness on my right side, gait issues as well as some other symptoms.   My MDS did her due diligence and I went through the process to rule out anything else.  I also had two second opinions from two other MDS at different hospitals.  All came to the same conclusion - YOPD.    I have been treated as such since then.  I have been very blessed in that my progression is slow and I respond extremely well to carbidopa/levodopa with out side effects.  

Since moving to VA - I have been in search of a new MDS.  I have seen two of them to date.  I live just outside D.C. and have gone to reputable clinicians.  One place is even an NPF Center for Excellence.   Both docs question my diagnosis.  When I asked why, they both seemed to think that because I was progressing so slowly that it indicated it is not PD.  Both claimed that YOPD patients progress faster - which is the exact opposite of what I had been told in prior years (and what I have since confirmed to be true - YOPD is slower progressing).   They wanted me to go for a DatScan.  So, I agreed and went.  It came back showing that I had PD.  They still both question the validity of the test.  One MDS wants me to lower the amount of meds I am taking to "see what happens".   I am very well controlled when I take my meds.  It took a long time to find the right dose that worked for me.  Why in the heck would I want to mess with my dosage just to satisfy their curiosity? 

Has anyone else had this issue?  I am just so frustrated.  

 

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I have a low opinion of doctors in that area. I presented significant symptoms and nobody even mentioned parkinsons.  I went around for 3 years there.   Two years later, I was in Texas, it got worse and a neurologist walked up to me and knew I had PD. DatScan confirmed it also.  I think they are just believe they know better.

Edited by MurrayPD2
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Those to docs do not sound like MDS's.  I have read a lot about PD.  Have read/heard of false negative Datscans for PD, but never false positives.

Everything I read said Young Onset has a slower, smoother progression.

I would seek out a 3rd, or even 4th if need be.

I would not decrease my meds just to make these 2 happy.

Really sounds unreal to me.

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Get a third opinion. And if your meds are working for you and causing no side effects I can't imagine why you'd want to mess with that. You can correct me if I'm wrong, but it sounds like a doctor whose worked with you for less than an hour is suggesting messing with the work of YEARS to get your Medications right, out of curiosity. Some people become drs because they are curious, others because they care. Find one that cares.

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Maybe you could get your old MDS to call the current MDS you like the most to explain the diagnosis and why it was reached. Probably hard to get a doctor to do this, or may have the old doctor write a thorough letter. Just thinking of a way to avoid a third opinion, as this could go on forever. I think many specialists simply don't care to accept a diagnosis reached by another doctor, particularly one they don't know. Good luck.

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