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saguaro

Diagnosed!

13 posts in this topic

Hi. 

 

I received my official dx two weeks ago, just over two months after my first neuro. appointment. What a wild ride. I mostly feel relief, which makes me feel slightly guilty because, you know, who responds to a dx of PD with relief?! But, on the other hand, knowing is always less frightening than not knowing.

 

I was diagnosed after responding favorably to three weeks on C/L and a positive DaTscan. Before my last appointment, I was taking C/L 50-200 twice a day. We briefly discussed adding a 3rd evening dose, but my neuro. decided she wasn't ready to increase my dose yet since I'm still young,  27, and she needs to think about keeping me on C/L for 40+ years. So we started .5mg of Azilect instead, and that has been amazing. I feel super focused, less of a compelled to take a nap in the afternoon, and it helps with my tremor quite a bit. 

 

The neuro. was hesitant to diagnose without a Datscan for 2 reasons. 1) I coded twice and spent 6-weeks on a ventilator after birth 2) my tremor is not typical of a parkinson's tremor--instead of being pill-rolling; it's better characterized as myoclonic jerks. I've also had it since I was 6-ish (though I doubt I have had parkinson's that long). My other symptoms include some stiffness in my right leg along with a little bit of heel dragging, and, when I'm off meds or on too a low dose, a slight tremor in my jaw and left hand (mostly thumb)--the jaw and left hand tremor are very slight and only show up at random. 

 

So weird to be diagnosed and easy to forget about, pretend it's not real, when the meds are working.

 

Odd question: Was there anything you did that you thought was normal until you found out you had parkinson's? For instance, my husband used to tease me about how much I drool in my sleep; I always thought he was exaggerating--everyone drools in their sleep. Come to find out, parkinson's can give one a special penchant for excessive drooling  :-P

 

-rachel

 

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Rachel,

 

Welcome to the forum!

 

You are lucky to have a neurologist that is concerned enough about your future to want to take some time to think about being on Sinemet for 40+ years.  I am 55 and am concerned about the same thing (and I'm not taking Sinemet yet, despite being diagnosed 2 1/2 years ago).

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I agree with PatriotM.....it's great to have a Doctor that is proactive...

 

I'm 56 and am on Azelict as Monotherapy.....

 

I feel great on the Azilect and a rigorous exercise program....

 

I'm in hopes this wil be my therapy for many years to come....wouldn't it be fantastic!!

 

Welcome and good luck!!

 

Discovery

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Welcome Rachel, Sorry you had to find us but glad you did.

 

To answer your question. I could never snap my fingers with my right hand. My husband thought it weird but I never gave it much thought. Also, for the last 10 years or so I would bang into door frames as I went through doors. I now believe these were my early warning signs.

 

Much like you I had a Dat Scan with result consistent with PD Held off on all med for about 8 months then started Azilects. It has been a good drug for me. When I added small dose of sinement all symptoms are well controlled.

 

Good luck. My advice is to research and listen to what you body is telling you. Don't just take what your doc says as written in stone. Took me a long time to decide how and what I was going to do to best live my life. I think I have found my "Sweet spot" as so many on here say. Just hoping I can keep it that way for as long as possible.

 

Blessings

Adam

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Thank you for the warm welcome!

 

I've been more than happy with my neuro.

Adam, I've always banged into things as well--now I don't have to apologize for being clumsy.  Do you have any go to sources for keeping up with PD research?

 

I feel lucky to have found some medicines that work. As a kid, the occasional doctors I'd see about my tremor would almost always jump to calling it an essential tremor and put me on sedatives. My parents never kept me on the medicines too long--they weren't very effective, and they left me pretty zoned out. So it's good to see a big difference without any prevalent side effects. 

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I have found this site to be very helpful. I use the Fox trial finder to look for new studies to get in on. (I managed to join the Isradipine study last year because of the trial finder.) Every time I see Dr. Okun mention a drug or treatment I am not familiar with I look it up. I have watched several videos on Youtubes MJF foundation. I always ask my MDS if anything new is coming. (thankfully she is working for a research hospital). I liked the MJF facebook page and my local NPF page. I get news feeds of latest treatments and research that way.

 

If you see someone mention something (drug, surgery, symptom, ect) I usually Google it so I can learn more.

 

These are the best tips I can give.

 

Last bit of advice. Make sure the source of the info is a good source. Not just Wikipedia.

 

Remember.. everyone on here will have a different opinion on what works best. Take all info in processes it and then decide what will work best. Your PD journey will be much better if you know what could happen so you can plan for the worst and hope for the best.

 

Feel free to ask me anything. I wont hide

 

Blessings

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With that screen name I'd guess you are in the Tucson area.  I lived there for a few years and worked for Raytheon.  Tucson was my favorite place in the USA that I've lived.

 

Anyway, glad to hear you are getting the answers you need.  As Adam said, feel free to ask questions.  Most of us here will give you our honest opinions and admit when we don't know something.

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Welcome , even though you probably don't want a welcome to a forum for PD ! But if you have Pd there are a bunch of people here with a lot of knowledge . I am 51 and thought I got it young ,But you are correct knowing takes a big weight off !    Dan

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Welcome, Saguaro! Like you, I mostly felt relief when I received my diagnosis last year. Fear of the unknown is the worst! 

 

Not only did I think the drooling was normal, I never thought much about my greatly diminished sense of smell. I just chalked it up to chronic nasal allergies. Who knew?

 

MJFF & NPF seem to be the best for online information. I would also encourage you to attend any seminars in your area should you hear of them. That's how I found a YOPD support group in my area; looking forward to my first meeting later this month.

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Thank you all for the warm welcome, and thank you for the info on parkinson's sources. 

 

Secret Squirrel, when my neuro. tested my sense of smell, she had me close my eyes while she held a paper towel full of coffee grounds under my nose. I think it was her idea of a joke :-)

 

Stump, I was an army brat growing up, but I have a lot of family in the Tucson area. I swear I spent half my childhood driving between El Paso and Tucson. Not that I'd complain about that. I'm in the Dallas-Ft. Worth area for school now

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How strange. It never occurred to me that my inability to snap my fingers might be PD related. I thought it was like tongue rolling; some folks can and others can't. My caregiver is laughing at me and snapping her fingers at me. 

.

Welcome, Rachel/Saguaro. I lived in the Fort Worth area for 30 years from 1981 through 2011. I moved home to Seattle after my diagnosis. My .daughter lives in Lewisville.

 

Keep coming back!

 

Dianne

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Years ago I was able to whistle loudly without putting my fingers in my month, then one day it was coming out just like blowing air.PD onset. Suddenly, I found out I could not throw a ball where I wanted,more PD onset. I can snap fingers no problem.

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Severak years prior to my diagnosis, I would wake up in a puddle of drool. I had back pain that wasn't typical spasms, it would get tight and not release. I would get chilled and shake uncontrollably for a few minutes. I would get cramps in the bottom of my feet if I was working on my knees. Months prior to the tremor appearing, I noticed my foot scuffing the ground every now and then. I never thought about Parkinson's until I looked up resting tremor.

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