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Sjrcle

Early onset PD

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New to  the PD community, my  son age 23, has Doctors in a tizzy. they  cant say  for sure he has Early  Onset PD. wont say  yes, just say he has a LOT  of the symptoms.

Anyone have any insight to this?  this is  new to us as it has been 4 months into testing and meds.

thanks,

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Hi, Sjrcle.  You're in a good place with people having had a lot of experience and information to offer from their journeys with PD.  I'm sure they'll be posting.  They're a very caring and supportive group.  It may be that because it's a Friday and also because a lot of us have our eyes on the news regarding the hurricane and the ongoing confirmation process of Brett Kavanaugh that there are not more posting today. 

I can offer one of the very most basic and important things to be sure to do as you search out a diagnosis for your son.  That is to be sure the physician he is seeing is a Movement Disorders Specialist in a neurology department connected with a reputable research university,  If you let us know where you live, perhaps some can give some suggestions.  I live in Baltimore, MD, and see an excellent MDS at Johns Hopkins.  It's worth a wait in order to get him an appointment with an MDS if you have to (there are not yet enough MDS's to go around to take on the quickly growing Parkinson's Disease patients, so that's why there can be a little wait).  MDS's are in training toward the specialty, though, so that's an encouraging thing to know.

All the best to you and your son.

Linda

 

 

 

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Definitely see an MDS and seek out a research hospital. It’s worth a drive if you need to do one. Plus your son is young so it would benefit him to do any type of research studies. I have done 4 in the past 3 years. 

 

Good luck! Reach out anytime! 

 

LAD

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Sjrcle,

With his age, he should definitely consider a DatScan.  In addition to the clinical diagnosis, he would have something tangible that you can see which will reduce any doubt. If he's not seeing an MDS, then he needs to see one.

Dave

Edited by DaveN

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Sjrcle:

Yes, most of us here probably have way too much "insight" into what is going on with you and your son's predicament.  I too heard the "you have a lot of the symptoms" and "but you're too young" speeches.  The pre-diagnosis medical run-around is really frustrating, but on some levels it is also a bit necessary. 

If it will help, during my journey I visited one neurologist who tried to encourage me to be patient with the system.  She told me that she herself had Lupus, and even though Lupus is a disease within her area of practice, it still took her and her colleagues over three-years to diagnosis her problems and start the proper treatment. 

Unlike a broken leg, neurological diseases don't come with a nice label already attached and easily read.  Rather, from what I've observed, neurological disease are just a whole lot of problems (that doctors call symptoms), that could fit any one of seemingly hundreds of diseases, and the doctors have to slowly sort through each to find the proper treatment that will provide relief.

I agree with Linda, LAD and Dave that when trying to rule-out a diagnosis of Parkinson's, finding a quality Movement Disorder Specialist (MDS) is critical.  When trying to treat Parkinson's, finding a quality MDS is critical.  Even though Parkinson's is a neurological disease, it is a neurological disease that is only taught to neurologist who pursue advanced studies specifically in movement disorders.

Cheers.

 

 

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