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Superdecooper

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Hi Gang,

I thought I'd post a short note on this forum.

Following a positive Datscan two weeks ago, my MDS diagnosed a dopamine deficiency, with very early onset of PD symptoms. The MDS said my mild motor issues, including some with a psychogenic overlay, don't rise to the level of full blown Parkinson's disease. However, the non motor symptoms definitely raise the prospect of PD, so he's starting me on Azilect later this month in hopes of keeping me from developing into Parkinsons in the coming years. I'll get another Datscan next year, but he expects that will also come back positive for PD.

I'm not sure how you can have a lack of dopamine causing a resting tremor, apathy, right side stiffness, insomnia, night sweats, vivid dreams and kicking, diminished sense of smell, painful dystonia and small handwriting, low testosterone, reduced arm swing and dropping things and not have PD. But, I'll go with the diagnosis for now as long as the Azilect begins to address all that in the next three months. Looks like we caught this early and might have a chance to head things off.

So welcome, or something.

If anyone has a similar story, I'd sure like to hear it.

-S

Edited by Superdecooper

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Superdecooper:  Now you are an ideal candidate for vigorous exercise!  Start boxing, or biking!  We look forward to seeing you not progress!

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Superdecooper,

Just some info for you. If you do have Parkinson's disease (sounds like you do) most likely your MDS chart will say Primary Parkinsonism, or Parkinsonism. My chart still says this. I asked my MDS about it. She told me that it will say that till after 5 years of history is achieved. She said they do that incase you develop PSA, MSA, or one of the other Parkinson plus syndromes. It still allows them to treat you with proper medication. Till they have a definitive way to test for just Parkinson's they have to use this method.

Food for thought.

Blessings

 

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I'm not sure I understand Adams comments. Is it that my MDS is not going to give me a full diagnosis for years?

In the meantime, i can't afford illusions or false hope about my health status. I realize my life has changed because of Parkinson's disease. 

My second home is the gym. 

-S

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Some hand out the Full PD diagnosis right away, some wait until after a positive drug trial on the parkinsons's meds- like Azilect, carbidopa-levodopa. Really just depends on your doctors philosophy, and the very real fact that PD is frequently misdiagnosed in the young but the rate rises to about 85% if you've had a DatScan.  If you take the drugs and get a response, you're most in the club. 

The DatScan shows the architecture of your dopamine uptake system, and by repeating in a year, if it is PD it should so reduced uptake in that time...

I got the full PD after the drug trial, and just so you know, the diagosis code doesn't distinguish between Young On-set and Older.  It's just G20- Parkinson's Disease.

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It is not illusion or false hopes. Parkinson's and Parkinson's Plus syndromes all start the same. So to make sure they are keeping a close eye on your case, and the only way Currently is to give everyone with Parkinson's like symptoms an intial DX of Parkinsonism. Your doctor will still use the term Parkinson's but until you have reached that 5 year mark, they will still chart you as Parkinsonism to make sure they are watching your symptoms incase they do change.

I personally am glad my MDS and all 8 of the MDS's at University of Rochester Movement Disorder Clinic use this system. It signals to them to take extra care with recently diagnosed people to look for symptoms out side the ordinary regular PD. It is just a way for the doctor to stay extra vigilant in your care. Sounds like you have an MDS who follow the most up-to-date way to track PD patients and that is a good thing. Means they are trained in all the latest and best practices for treatment of PD.

I hope this clears up things. Unfortunately there is no blood test or scan that doctors can do to tell if you have regular PD or a PD plus. It is just a wait and hope you stay on a normal progression path.

P.S. 99% of people end up with regular old PD. The PD Plus syndrome are much more rare than what we have.

Edited by adams234

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Hey gang,

yesterday was pretty tough. Lots of pain from a chiropractic manipulation of my lumbar spine and SI joint, plus I'm weaning off of narcotic pain meds as I'm preparing to switch to azilect this weekend.  

Plus the pain meds were at least minimally dulling pain in my rotator cuff. The bacolfen I'm taking for the dystonia in my hand and right side stiffness is not terribly effective.  Just makes it tolerable.

The good part of my yesterday was swimming and sitting in the jacuzzi  and laughing with my wife. 

As usual, I woke up early around 5 am today,  after a bunch of wacky dreams, drenched in sweat.

This stuff sucks. Oh man  

-S 

Edited by Superdecooper

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hey gang,

Just found out how to do this: Here's my Datscan from early December

https://drive.google.com/file/d/1BBGh97ajaCiWiXDvWofFB8MiYAaiq-5m/view?usp=sharing

Impression

Variable degree of decreased tracer activity in the left sided caudate and bilateral putamen as described above in
detail is consistent with a deficit in dopaminergic transmission, which indicates a parkinsonian syndrome, but
cannot accurately differentiate Parkinson's Disease from multiple system atrophy or progressive supranuclear palsy.

Clinical correlation is advised.

MDS says its a dopamine deficiency and he's treating me with Azilect. 

 

Edited by Superdecooper

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8 hours of Sleep would be so nice.

So, I slept for a full eight hours the other night. First time in about a year. Could it be the Azilect? Just not sure what combination of things I did to make that happen. And, It hasn't happened again so I don't know what actions to duplicate.

I did sleep in a pajama top. And I slept on top of a cotton towel. So those two things absorbed the usual sweating that I go through every night. I didn't wake up in a cold sweat. I did have a vivid dream, but I don't remember it - I just remember waking up with the feeling I had just escaped some tragedy...usually I can recall most of these dreams every night when I wake up at 3 am or 430 or 5. (For example, the next night I dreamed I was walking around a plane crash looking for survivors.)

I also swam intensely for just over 30 minutes earlier in the evening. Usually I swim around 20-25 minutes with a more leisurely pace. I also took the Baclofen, Melatonin and Gabapentin about two hours before bed, instead of right at bedtime. 

-S

Edited by Superdecooper

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