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Janice Higgins

Frustrated about doctors who question my diagnosis

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Hi - I am 48 and was diagnosed at 35.  I have been treated for PD for 13 years.  18 months ago I moved from MA to VA.  I have seen two neurologists here and both have questioned if I actually have PD.   Yesterday I had an appt at Georgetown University Neurology and she basically said that I do not have PD...it's not possible. She said I have something called Functional Neurological Disorder.  She wants me to stop taking my sinemet to see what happens.  (ah...no. not doing that)  They are basing their opinion on the fact that my symptoms have not dramatically progressed in 13 years.  My symptoms are very well managed with medication.  I respond extremely well.  I am fortunate.  I haven't had to have that much of an increase in my dosage over the years - although it has increased.  The doctors don't seem to want to take into account my entire medical history.  I had an amazing Neuro Dr in MA who was very good an managing my medications to suit my symptom control needs.   Then three years ago, I had bariatric surgery and lost 100+ pounds.  This had a huge impact on my PD symptoms.  I could move so much better with the weight loss.  Prior to my surgery, I was having a great deal of difficulty walking and needed the use of a cane.  So, because the doctors here never saw me pre-surgery, and they see a person with 13 years diagnosed and they arbitrarily decide nope... not PD.    I have done numerous trials over the years.  I respond to meds (Sinemet especially).  When I miss a dose it is obvious.  I have dystonia, resting tremor (which was my first symptom).  I am so frustrated!!  Has anyone every had something like this happen to them?  I am actually moving back to MA in a few months.  Unfortunately, my old doctor has retired but I am hopeful that I can find another in the practice that will understand my case better.  Please someone tell me I am not nuts for wanting to tell these doctors to take a hike.   I don't want to think that I know more than an extremely well educated doctor but for goodness sake....  I have to say that both the doctors I have seen are young and my dr in MA was older.  I don't know if that is what makes the difference.   I don't want a new diagnosis.  Just treat me for what I have been treated for successfully for years. 

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otolorin    29

Hi Janice, PD they say is individualised.It affects everyone differently.My MDS once told me at diagnosis, that progression is very slow,when diagnosed at a young age,I beleive you fall into this category when you were diagnosed,i.e young onset PD group.You are right,sinemet might be well tolerated by you,and it is really keeping your symptms at bay.I have read some postings on this forum about PWP, who don't feel or see any progression for many many years,while being medicated.So your situation is not exceptional.I was diagnosed roughly 2years ago,and probably having some mild symptoms like apathy,anxiety 5years before or longer.I am in my early 50s now.Like you stated,the young Docs are inexperienced.So do not stop searching for a more experienced,movement disorder specialist.Since you responded well to the sinemet,I would say,this is usually part of the test for diagnosing PD.I am familiar with MD frustrations.I saw three different neurologists with conflicting opinions before meeting the last one,who is a MDS.You stated that sinemet helps with your symptoms,so stick with it until you see a MDS that you are comfortable with.And welcome to this forum.

Edited by otolorin

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DaveN    428

Janice, why not make an appointment with the doctor and skip your regularly scheduled dose so they can see your symptoms on display? My appointments usually are right around a scheduled dose, so some of my appointments I'm approaching my OFF state.


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Gardener    194

Hi Janice,

Wow, thirteen years after dx, medications, etc. and your told you probably don't have PD!  This happened to me at the 5 year mark.  I was dx by an MDS and followed-up every 4 months with either the MDS or the NP.  Sinemet was started after year one and gradually increased to about 1000mg per day.  I really didn't feel my symptoms were under good control until I reached that dosage.  I've been managing well on medication and the recent addition of Trazadone for sleep has given me back some energy. 

A year ago, I was scheduled to see a new MDS as the one who dx me moved to another health center.  She questioned my dx and ordered a Datscan.  I left that appt. feeling very confused and worried that maybe I had some other form of Parkinson's disease.  I called her office the following day and requested to be examined while off medication as I felt the DatScan was totally unnecessary and a waste of money.  She refused to examine me off medication and insisted on a Datscan.  I decided to leave that facility and followed the MDS who originally dx me. 

I guess if there is any doubt in your mind a Datscan might help.  There was no doubt for me as I have done my own medication experiments to assess my progression.  Good luck and let us know how this turns out.





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