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Young onset PD testing

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Looking for some much needed feedback regarding Young Onset PD testing. After noticing left arm tremors and I sought out medical advise from a family doctor in fall 2015. I was ordered an mri of the brain and neck then sent to neurosurgery, physiatrist, podiatrist then finally neurology. The chase began. 

All medical providers jumped on a cervical disc herniation with cord compression. Had the surgery to resolve that at c6/c7 level. Symptoms continue through the year following surgery. 

I end up on the door step of an MDS. He does a quick exam and with no further testing being ordered he says we’re going to try Levodopa. Incremental increases over next five weeks to see if symptoms change. At week four and zero change. There was no labs ordered or anything. Just try the medication. Side effects are very bothersome from the Levodopa with another increase. 

Is it unusual to not have additional testing before the Levodopa challenge? Is there a protocol of things that should be first? I’m just very confused and very frustrated chasing answers. Thank you 

 

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I did not have meds test. I had a Datscan. I also had a cervical fusion at c5-c6. 

If you are not comfortable with your MDS-can you find another one? The relationship you have with your MDS is important. 

You may want to post on the ask the pharmacist or ask the doctor forums. 

 

LAD

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Unfortunately the best and most common test is to try Levodopa, if you respond with good results then they are sure you have Parkinson's.

There is a DatScan, it is very expensive if you don't have good medical coverage. The DatScan will not say you have Parkinson's but it will rule in or out other diseases that can mimic Parkinson's. A doctor will not order one unless they are not sure what you have.

If everything in the clinical exam points to Parkinson's type of disease they will try the Levodopa first and see how you react.

If your side effects are nausea try eating some crackers or toast when taking your pills.

I agree with LAD, a question in the ask the doctor forum may give you a better answer.  

Hope this helps

Adam

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Agree with the above responses.  I'll add that not responding to levodopa doesn't rule out PD.  Some significant percentage (20% IIRC) of tremor dominant PD patients never do.

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I appreciate the responses more than you know. In talking to the MDS, he is using the Levodopa challenge as a test of exclusion. He did say that some of the symptoms should have improved after 5 weeks, but they have not. 

Unlike most diseases, this beast has no simple conclusive testing to identify its presences. Patience is a virtue that hasn’t graced me yet at 45 yo. Continuing the chase for answers. Thank you all for the feedback. 

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If your smell is still good, you can smell coffee, banana from a distance, most probably what you have may not be PD given you also didn’t respond well to levodopa. Smell is a good sign to tell your brain neurons are still very healthy. pD symptoms usually appear years after smell is gone

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I hope this is not a silly question, but how much of a distance? Do you mean whether you can smell it once you enter the room or can you smell it from upstairs?  For me, I mostly have to have those things right under my nose to get a smell. That's quite a reduction from being able to wake up and smell the coffee brewing while lying in bed.

-S

Edited by Superdecooper

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Here is Dr. Okun responding to a question about sense of smell diagnosing (or ruling out) PD: 

Quote from Dr. Okun: "It's a myth."

My MDS agrees. FWIW, I've been diagnosed over 4 years (confirmed by DatScan), have classic PD symptoms, and still have a good sense of smell.

In my view, while waruna01 surely means well, he/she needs to make it clear his/her opinions are opinions only--I don't believe he/she is a medical professional or, for that matter, a person with PD.

A lot of people come to this forum seeking answers--some will turn out to have PD, some won't--it would be unfortunate if any of them mistook a forum member's strongly-held opinions for medical facts. 

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David,

While I whole heartedly agree that members should preface our remarks as our own and not as medical fact. We should refrain from saying whether someone does or does not have PD. Warrun01 holds very strong beliefs and means well.  A lot of folks come on here looking for answers and we all try to be supportive as best as we can.

Dave

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Good point DaveN,

my wife says my sense of smell is terrible. I disagree. So we just leave it at that. I don't know what I'm missing until she points it out. 

-S

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As far as my sense of smell goes I feel it is unchanged. I have not had anyone say something smells that I could not smell.

I do have PD, and a positive date scan with a great response to C/L. So I guess the whole smell thing is not a guarantee that you have PD or not.

Blessing

Adam 

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