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MarkDC44

Newguy questions - Second opinion, and med changes

12 posts in this topic

I was diagnosed just this past October 5th with Parkinson's.  I'd been assuming for a year or so (2?) that I had essential tremor (which my father had), before I became aware that my tremor was strictly a resting tremor - plus it got noticeably worse, going from just left hand fingers to the whole hand, left leg/foot, and my jaw over the last year.  Once I started looking into the symptoms of PD, I started checking off a lot of virtual boxes, although I do NOT experience rigidity/slowness or pain.  I went to our local VA, saw a neurologist there, and within 20 or 30 minutes he diagnosed me as having PD.  (Good chance that it's a little memento from my adventure in Vietnam back in 1969.)  He started me on Ropinirole.  I've upped the dosage of that a couple of times, such that I'm now on .5mg x 3, 3 times/day.  I think that it has lessened the tremor severity just slightly; it's never really gone away.  After I checked in with them a week ago, he's now added Sinamet (half tab of 25/250 3 times) to that, which I started only today. Oh, and he did have me get a DaTscan.  I'm told that the scan confirms it, although I haven't actually seen it, which would be nice.

 

I've been wondering if it's possible that I went to him and sort of "sold him a bill of goods" - in other words, could I have listed a bunch of checked-off boxes for him (tremor, loss of smell, low-voice, handwriting that sometimes curls up into a tiny mess, starting to see balance issues, a loss of cognitive skills at work, to some extent, etc.) and just force-fed him my own diagnosis?  

 

I've scheduled a visit to another neurologist through my 'civilian' doctor (won't happen until February).  Does anyone have a thought about that?  Is it a waste of time (and insult to the first guy), or is it a good idea?  I have not had any records/results of scan sent to Dr #2 at this point - thinking I want to start "fresh" with him, but I don't know if that's also a mistake.

 

My other question is - how much improvement should I expect from medication?  Do PD folks get total relief from tremors for a couple of hours, or is that looking for too much?  Is it a mistake for me to add the Sinamet to it in order to get that result?  This probably sounds really stupid, but - would that be just masking a symptom that you'd really rather have showing its presence so you know if it's progressing?  I'm not trying to overthink this, but I just don't know if I'm carrying this too far, or making too much of it.  After all, my understanding at this point is that it's probably only the tremor that can be helped with the rx anyway, and the tremor is not really keeping me from doing too much, especially now that I'm retired.  (Is this making any sense?)

 

If anyone can offer any insights on these 2 questions, or anything else for that matter, I'd really appreciate it!

 

Thanks,

Mark

 

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If you scheduled a second opinion appointment you should keep it. Second guessing yourself will be counterproductive to your grieving process.  The sooner you can accept that you have PD the easier it will be to live with it.

 

We all react differently to medications. To some it is like a switch, hardly any symptoms left while medicated, to others, medications need be tweaked regularly.  You need three things to deal with PD 1. a positive attitude, 2. medications and 3. daily exercise.

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I'm not a doctor, nor do I play one on TV.  That said, while it's possible you got a Dx based on what you told him, rather than his observations of your symptoms, that you (allegedly) had a positive DaTscan implies that you probably got a correct Dx from the VA doc.

 

It will do you no harm, aside from the time it takes out of your day and whatever co-pay you'll owe, to get that second opinion.  If it would give you piece of mind then that is money and effort well spent.  I'll be surprised, given what you wrote above, if the second doc gives you a different answer.  And as for the first doc, if he's offended/insulted by your getting a second opinion that would be a firing offense in my book.  He wouldn't be my doctor any more in that case.

 

The improvement you'll see from medication, assuming you have PD, is highly variable.  Some people get little relief from Sinemet, others (like me) get near immediate and near total and lasting relief.  My tremors are well controlled by 3x per day Sinemet.  I would say that my tremors are about 80-95% controlled depending on the day.

 

Be aware that medications do not alter the progression of the disease, they just suppress the symptoms while they are in your system.  Once you stop taking Sinemet most people see their symptoms return with no lasting improvement within hours or maybe a day or two at most.

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Welcome, Mark. Your second guessing what sounds like a solid diagnosis is normal. I didn't want mine to be accurate either. Not everyone has all the symptoms on the list. There are people with Parkinson's (PWP) who never experience tremor. Your list of symptoms, the neurologist's exam and the positive Datscan provide a pretty convincing case.

 

If the 2nd doctor is a Movement Disorders Specialist (MDS) and not a general neurologist, it would certainly be a worthwhile visit. An MDS has much more experience diagnosing and treating PD. They are usually in a setting with all the other professionals who will be needed to effectively treat PD; physical, occupational and speech therapists, and neuropsychologists all have important roles to play.

 

While I know it is no fun to get this diagnosis, you have reached out to a very supportive bunch of folks who are learning that there is still life after diagnosis. I'm glad you found us.

 

Dianne

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Thank you Herc, Stump, and Dianne!

 

All good information.  I'll be keeping that second neuro appointment - not because I think the diagnosis is incorrect, but it just seems like a good idea to ask questions of another Dr., such as what he thinks of the medications that've been prescribed.  Thank you.

 

Stump - You're still young enough to try playing a Doc on TV - suggested title "Houseboat"?

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My personal second opinion protocol is to tell them you're looking for a second opnion, and don't want to bias it by showing scans, etc. Once they form an opinion, then I give them the expensive or impractical to repeat info.

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kind of late to the party but  welcome ,not that this is the place you wanted to be welcomed to . I don't know what your rating  is at the VA  nor do I know where or what you did in Vietnam . That being said if your rating is not 100% and you haven't filed a claim with the VA for your PD ,do so immediately ! Exposure to agent orange is almost a given for Vietnam vets as it pertains to PD . The VA will give you a general rating for the PD but will also assess your symptoms . Such as the tremor ,rigidity , constipation ,urinary problems ,depression, etc  you can get information on filing a claim at the vfw , American legion , your local VA clinic should have a counsler or maybe your county building has a veterans department . Thank you for your service !!!!

Dan

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has anyone tried  mucuns pruriens....I would like some feedback concerning this ...

 

thanks

 

oorah

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Mark, welcome to the forum. I know I am kind a late to the party here.

I saw 3 Neurologist, 2 of them were MDS's before I could accept what was going on fully. I even had a positive DatScan as well.

I hope your feb appointment was productive.

Blessings

Adam   

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Thanks Dan and Adam...

Yes, VA treatment has been very good (here in Connecticut at least), although I did go to that MDS in February.  He agreed with everything the VA Neuro was saying and doing, as I might have expected.  In a couple of weeks I'm going to see him one more time and ask him to look at my DatScan (cd) with me.  It was good to have someone else confirm, though.  

I did apply for VA disability, that should come through soon.

Gosh, you people are too young for this crap.  I was lucky, it held off until I was an old fart...

Mark

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