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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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Cross your fingers, I seem to be turning a corner here.

Since last week, ive  slept between 7 and 8 hours and the night sweats seemed greatly diminished. 

-S

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Some news —

Johns Hopkins University Hospital Department Of Neurology approved me to come in and get seen by an MDS and get a Second opinion in early June. I sent them my records and Datscan and they said come in. 

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I'm still finding it pretty hard to believe I'm actually dealing with Parkinson's Disease and taking Azilect. Is that unusual to think - how is it even possible - that something like this could happen to me? I seemed to be cycling between disbelief, worry, anger, and maybe some grief, but I'm no where near acceptance.  Other folks dealing with PD longer than me have said I should try to live in the present, that's way easier said than done. I'm trying to live in the moment, but right now my symptoms are not under control.

-S

Edited by Superdecooper

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2 hours ago, Superdecooper said:

I'm still finding it pretty hard to believe I'm actually dealing with Parkinson's Disease and taking Azilect. Is that unusual to think - how is it even possible - that something like this could happen to me? I seemed to be cycling between disbelief, worry, anger, and maybe some grief, but I'm no where near acceptance.  Other folks dealing with PD longer than me have said I should try to live in the present, that's way easier said than done. I'm trying to live in the moment, but right now my symptoms are not under control.

-S

Hang in there! It's definitely a process.  And yes...like you said ...it sucks! 

 

LAD

Edited by LAD

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Hi Gang,

Just an update -- I've been on Azilect for almost two months now.

So my sleep patterns have changed some, but still not optimal. I'm up to 6 hours a night of sleep, pretty consistently now. I'm pretty happy about that! Six hours might not seem like much to others, but I was averaging 3 or 4 and couldn't get back to sleep. 

The night sweats haven't stopped, however. Now, I just sleep through them or wake up briefly and go back to sleep. In the morning, I wake up damp instead of soaking wet in the middle of the night - mostly. I'm Still having some vivid, terrible dreams, but definitely not three or four times a week anymore - maybe only three times this month. I've noticed if I take some of my other pain medicine (gabapentin or baclofen) too late, or go swimming too late, I'm in for a rough night followed by a pretty rough day. 

The hand tremor I mostly can ignore - unless I'm trying to use my laptop or use the remote control or if I'm sitting still or lying still -  If I don't get out of bed within about 10 minutes my hand tremor starts - plus there's sometimes when my teeth chatter, but that's not very often - usually when I'm pretty tired or exhausted.

But the dystonia in my right hand is almost impossible to get over. I've started occupational therapy to try to deal with it - so we'll see. I have inconsistent pain in my rotator cuff that comes and goes, and lots of stiffness on my right side. Just about every masseuse I've had in the last three months has asked me why is my right side so stiff - they spend most of the appointment trying to get me to loosen up -  shoulder, hamstrings, calves, back etc. 

My wife said I should keep a journal so that I can give the doctor better information. 

-S

Edited by Superdecooper

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55 minutes ago, Superdecooper said:

Hi Gang,

Just an update -- I've been on Azilect for almost two months now.

So my sleep patterns have changed some, but still not optimal. I'm up to 6 hours a night of sleep, pretty consistently now. I'm pretty happy about that! Six hours might not seem like much to others, but I was averaging 3 or 4 and couldn't get back to sleep. 

The night sweats haven't stopped, however. Now, I just sleep through them or wake up briefly and go back to sleep. In the morning, I wake up damp instead of soaking wet in the middle of the night - mostly. I'm Still having some vivid, terrible dreams, but definitely not three or four times a week anymore - maybe only three times this month. I've noticed if I take some of my other pain medicine (gabapentin or baclofen) too late, or go swimming too late, I'm in for a rough night followed by a pretty rough day. 

The hand tremor I mostly can ignore - unless I'm trying to use my laptop or use the remote control or if I'm sitting still or lying still -  If I don't get out of bed within about 10 minutes my hand tremor starts - plus there's sometimes when my teeth chatter, but that's not very often - usually when I'm pretty tired or exhausted.

But the dystonia in my right hand is almost impossible to get over. I've started occupational therapy to try to deal with it - so we'll see. I have inconsistent pain in my rotator cuff that comes and goes, and lots of stiffness on my right side. Just about every masseuse I've had in the last three months has asked me why is my right side so stiff - they spend most of the appointment trying to get me to loosen up -  shoulder, hamstrings, calves, back etc. 

My wife said I should keep a journal so that I can give the doctor better information. 

-S

Sounds like you have a journal going already. 😊

 

LAD

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I think many people with YOPD have a similar story of a skeptical doc that does not want to commit to a diagnosis.  Second opinion is definitely valuable.  I'm on my third neuro after only a few years in the club.  I too started with Azilect but developed impulse control problems on it.  (It's not that common for this drug but just keep an eye out and don't ever walk into a casino).   

I had issues with night sweats that seemed to relate to being overmedicated in the late evening.  I'm on sinemet now but I generally avoid taking it after 6 pm.  I also had a lot of sleeping issues and finally tried melatonin.  I take 3mg in the "gummy bear" form right before bed.  30 minutes and I'm out cold till 7 am.  It took a week or so to get used to but I'm glad I finally let my neuro talk me into it.  (I had bad experiences previously with melatonin but found the gummy form was way better for me, and it took time for it to really help). 

With the amount of stiffness you have has your doc considered sinemet?  As far as risk /reward it's approximately 1000000000000% safer than a narcotic pain killer.  Just a thought.

As for dealing with the transition to your new reality, the nice thing is that PD is typically slow and lazy as a disease so you have time to adjust.  I had similar feelings as you do but then I eventually got used to it and found a good med routine and now it's just an annoyance.  Just know that there is a good chance you will be able to dial in meds better than they are now and you may well feel better next year than this one.  In fact I'd bet you will agree with me a year from now.  I was diagnosed a few years ago and still feel better today than the day I was diagnosed.  Am I objectively better according to lists of symptoms etc.?  No, probably not, but I feel better so heck with it.  Don't believe the myth that life only gets worse after a PD diagnosis.  Hogwash!

 

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Hey Benderet,

Thanks for the post. I found it very, very helpful. I'm taking a higher dose of melatonin than you. I'm getting about 6 hours of sleep each night, sometimes 7, if I'm lucky. But insomnia, night sweats, vivid dreams are some of the symptoms that Azilect seems to be moderating. Less sweating, less waiting up in the middle of the night, and  less frequent crazy dreams - not gone, but better. 

I'm having some impulse control issues with Azilect, unfortunately. Last week, on a whim, I went shopping for new clothes and bought three pair of jeans - that's unusual for me since I rarely by clothes and definitely not that many at one time --- but, OMG - I was so, so very happy and excited when I left the store. It was like christmas morning! I still haven't decided whether to take them back. 

I did ask my MDS to give me a trial of Sinemet, but he declined saying he thought the side effects would make it not worth it and gave me the prescription for Azilect, which I've been on since the first of the year. It's having absolutely no impact on the dystonia in my right dominant hand, or the mild tremors, or the shoulder and hamstring stiffness. In what may be pure coincidence, I fell down a few stairs last week -- i was looking at my ipad and not paying attention. I caught myself in time not to do any permanent damage. I blamed it on concentrating on my ipad, until I tripped down the stairs a second time later that evening. Now I'm paying attention to walking.

I see the MDS again next week. I'm not interested in getting Botox injections in my hand - I'm just not a fan of botulism toxin, sorry. He may offer me an agonist, but I feel like a low dose of C/L would probably be more beneficial.

Finally, I'm not young enough to be considered YOPD, I guess. I'm in the latter half of my 50s, but I think that might be young for PD symptoms. Plus, I look like I'm about 35 maybe. The MDS even told me that I look too young and i have so much of my life ahead of me, that he didn't want to stick me with a diagnosis of PD, then he went on to start the very same treatment plan just like everyone else who has PD.

Let's just call it a dopamine deficiency, with very early signs of what looks like it could be PD, he says. This conflicted diagnoses comes despite a positive Datscan, and his clinical exam showing reduced arm swing and bradykinesia - (I know this because I got a copy of my medical records from his office.) Some of the symptoms could be partially in your head, others could be side effects of other medicine, he told me while also saying he was surprised when the Datscan didn't show I had essential tremor, which is what he was hoping was wrong with me.

Whatever. I really am less concerned about the label as I am with the treatment.

I need my right hand to stop jumping around and work properly and my brain to stop getting side-tracked by apathy, my shoulder and legs to stop hurting, and my sleep to flatten out to 8 hours. Right now, I'm okay with the meds I'm taking to treat my ED, sleep apnea, vitamin D deficiency. I'm ignoring my diminished sense of smell and my inability to quickly find the right words to say.

I'm getting a second opinion in June. In the meantime, I will find a way or make one...

-S

Edited by Superdecooper

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Just found out what freezing is. I was at the occupational therapist and she had me doing some exercise with holding paper and moving it in a pattern. Every time my hands reached a certain point in the exercise they just came to a complete halt. 

She called over  PD specific physical therapist who explained what freezing is and told me to try it again where I could see the wall as the end point. Voila no more freezing in the middle of a movement. 

Ive also been having some problems quickly getting up from a seated position. She said to move my head forward over my knees a little to get the process started. This happens to me a lot in church and I’ve been sort of not wanting to go since it’s pretty obvious to me at least that I’m still trying to stand up when others are already on their feet  

We also talked about a couple of times when I tripped on the stairs last week. She said I may have to start paying just a bit more attention to the placement of my feet especially when I’m tired or stressed. I’m having some problem with knowing where my feet and hand are in reference to other objects in space. Proprioception is what she called it. 

Not that big of a deal for me cause it happens at random times. 

-S

 

Edited by Superdecooper

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