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Debsten

Diagnosed at 40 very scared

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Mucuna and Ashwaghnda were ancient Ayurvedic meds to treat Parkinson’s and other neurological disorders  thousands of years ago. They may work if you can find right combination. You can get Mucuna over the counter. Both herbs have rejuvenating properties on brain cells when used properly and sparingly. Whereas, you need an official Parkinson’s diagnosis to get  Sinemet. That can have ramifications as you will have to live with that diagnosis. If you have issues with digestion, bloating is a warning sign, you are more prone neurological disorders like Parkinson’s. Eat healthy foods. Hot water helps digestion. You could make a habit to drink warm water if you can. Thripala is also helps digestion when taken at night. It’s a great herb for Parkinson’s patients to take as it also helps constipation

Edited by waruna01
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Thanks for your responses.  I like your suggestions waruna1, but I can’t just stop the sinemet.  My plan is to have DATScan and go from there.  I will also be shopping around for MDS’s to get one I feel best with.  For the moment I also want to be able to get over this anxiety & depression, I have so much to look forward to in life and hate this feeling I am having.  

Jill thanks for your reply and your prayers. 

This is definitely a tough journey, especially mentally for me at the moment.  I really look forward to being on the other side of that struggle, I want my joy back.  

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@ waruna01 (and apologies to Debsten for going slightly off-topic on your thread),

Although I'm sure you mean well, and I'm happy for you that your self-diagnosis of PD was incorrect, I think your focus on loss of smell is misplaced.

In my own case, I've been diagnosed with PD for over three years. Initial dx was by an experienced MDS, with positive DATscan last year as part of a clinical trial.

I have movement symptoms that while mild, are absolutely classic presentations of early PD.

And guess what? I still have my sense of smell. Having cooked professionally for a number of years, trust me--I would have noticed if it was going away.

I asked my MDS about this. His response was basically a shrug: Sure, lots of people with PD lose their sense of smell, but some don't. In his opinion, there's a lot better diagnostic tools than having someone sniff a banana. This is a guy who did his MDS fellowship at a top PD research center, is currently conducting 3-4 clinical trials, and is part of a practice with (IIRC) more than a thousand PD patients.

More to the point, there's all sorts of reasons a person with PD might want an early diagnosis. First, for many of us knowledge is power. Knowing what we have gives us choices about what to do about it, and how to plan for the future.

For someone affected by non-moter symptoms such as anxiety or depression (and those of us with YOPD are especially vulnerable), knowing these feelings are caused by the same lack of dopamine that causes motor symptoms can be a lot more comforting than trying to figure out why mental health issues seemed to have suddenly come out of nowhere.

For motor symptoms such as tremor, rigidity, and slowness, early treatment with PD meds can provide mild-to-significant relief. That can make it easier to exercise, be positive about the future, even forget from time to time that you have PD. The evidence is, because PD is progressive, whatever current level of relief a person gets from meds, that effect will always be *less* down the road. You can't hold off meds until 'things get bad' and expect meds to have the same efficacy they would have early on.

PD isn't a death sentence. I'm healthy, active, work full time, and expect all that to continue for years to come. In my case, early diagnosis gives me an incentive to make sure these years count (more travel, more doing now what I had been putting off for later), and do some planning for the future that everyone should be doing regardless (e.g., saving more for retirement).

Knowing the choices I have, and making choices with regard to things I *can* control, makes it easier to accept the things I can't control.

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Debsten, 

I lost my joy along the way too; but, can honestly say things have gotten better and not worse since my diagnosis (anxiety/stress-wise, that is). I found the medications to help "lift the cloud" quite a bit; and, I hope they do the same for you. When I'm having a down moment, I also try to think about the fact that things could be worse (i.e. I could have been given weeks to live, etc). It helps me to keep perspective. The hardest part for me was thinking about what I had expected my future to be like, and now coming to terms with the idea that it may not be like what I had thought!! But, I try to keep the faith and this has certainly opened my eyes to see how many people are suffering from chronic conditions and need my prayers. The things I used to complain about seem so trivial now...

I hope this encourages you at least a little. Sending hugs...:)

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Im sorry to hear you have been diagnosed with PD. I hate it, it hates me. I was diagnosed in jan 2015. At 40 yrs old. My first Neurologist was a disaster. Just a horrible experience. I was on carba/leva 25-100 1 pill 4 times a day. The depression from the diagnosis had started. Went for a second opinion a MDS. My first visit he prescribed lexipro. My moods were out of control. It helped but not enough. He increased the lexipro on the next visit and started me on an progression of increasing carbadopa till i was comfortable. Finally some relief. I was in a bad way, It took me several months to get out of my chair and away from the TV. My wife forced me to get up and do things my brother had to do all he could to get me out working on my truck. It took my family to get out of my funk. I was hiding from everyone and everything for 8months till it clicked. And my local support group helped, it was a simple brunch at Mimis cafe.

I had a dat scan to confirm PD. But as I have learned more I dont believe that its an accurate test. My opinion from information that I have been given and what I have researched. 

 Join a support group listen to the stories and tell your own. Check the meet-up app/website. Increase the meds as necessary with help from your doctor for QUALITY OF LIFE. No need to be struggling with this anchor. 

I have learned my YOPD is progressing at a different rate then in older people. Not trying to scare you. 

Take everything you hear with a grain of salt. No ones symptoms are the same as well as no one can fix it for you. Get a free book from the Davis Finney Foundation. And learn as much as you can. Dont put anything off do it today because you might not feel like it tomorrow. 

Don

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If you still have your smell and have PD, I would think it’s still a very positive sign as your PD is likely mild and will progress slowly if you stay positive and don’t let it get to your hear. I probably wouldn’t go too overboard with PD and depression medication as it might aggravate PD. Go slow and steady with meds only take the lowest possible dose that you need to function. If you can stay off Sinemet with just Azilect for some time, I would think it would be better. Exercise regularly. Eat brain healthy foods. Blueberrys are great. Herbs I recommended might also help. Get your Vitd levels checked too.

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23 hours ago, ShopGuy said:

Although I'm sure you mean well, and I'm happy for you that your self-diagnosis of PD was incorrect, I think your focus on loss of smell is misplaced.

After reading comments on the Open Forum stating "no PD if you can still smell" I asked the Doc to respond - I'm sure his opinion will be among his next postings.  I have not lost my sense of smell either though I do notice some decrease with certain scents.

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On 1/13/2018 at 8:34 PM, Debsten said:

Thanks for your responses.  I like your suggestions waruna1, but I can’t just stop the sinemet.  My plan is to have DATScan and go from there.  I will also be shopping around for MDS’s to get one I feel best with.  For the moment I also want to be able to get over this anxiety & depression, I have so much to look forward to in life and hate this feeling I am having.  

Jill thanks for your reply and your prayers. 

This is definitely a tough journey, especially mentally for me at the moment.  I really look forward to being on the other side of that struggle, I want my joy back.  

Hello, Debsten.  Good thinking on being firm and sure as to what you know you need and how you will proceed.  Everyone is different.  I would not be able to function without antidepressants, and I would personally encourage you to try that route.  Once your depression and anxiety are under control (and if you don't have clinical depression--where your body lacks in the things that the antidepressants give you), your doctor may slowly wean you off of them.  We are very fortunate to have the help the antidepressants can give.  I went to a social worker years ago for severe anxiety and depression.  At that time, only the very, very worst cases were prescribed medicine.  A couple of years later antidepressants became available for patients and were prescribed in combination wiith therapy by a mental health professional.   I tried each antidepressant as they came out, as the early ones had some not-so-nice side effects.  I want to share with you what has remained helpful for me for years.  It's a combination of wellbutrin and cymbalta.  Many have found this combination to be extremely helpful.  Since I have clinical depression, I'll always need meds to provide for my body what it doesn't produce without them. Your mental health professional may recommend something different for you if you are not clinically depressed, but situationally depressed.

 I strongly support your knowing it's wise to shop around for an MDS you feel comfortable and confident with, as it's so important as a foundation for going forward.  We have found that It's best to go to one who is with a research university affiliated medical center, just FYI.

I'll pray for you right now, and please do keep us up with how things go for you.

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Thanks everyone, I hope I see the light at the end of the tunnel soon!   It is a big fight for me at the moment, I dread waking up each morning and am scared of being alone with my thoughts.  I am usually a very positive person so these feelings are hard for me to understand.   Physically the neck & shoulder pain, arm weak feeling and buzzing feeling all over is what gets me the most.  I just keep telling myself it will get better and I can do this. 

I am looking at trying to see a specialist at either UCSF or Stanford.  Anyone have any experience with either?

 

 

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Sierra Farris MDS clinic in Denver or UF Dr Okuns Group is also very good. They see many PD patients from across the country 

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Well I just got back DATScan results confirming PD.  Also saw another MDS for 2nd opinion.  He recommended trying Ropinerole and then possibly cutting down on sinemet to 1/2 tablet 3 times a day.  He did say that it may help with my depression but could also make it worse.  This scares me a little as it is the anxiety and depression that is scaring me the most.  Anyone have experience with Ropinerole?

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I was started on Ropinerole ER 2mg when diagnosed and then moved up to 4mg. Side effects were terrible but the worst was having constant brain fog for months - I couldn't tolerate it. My dr recommended taking it at night and that helped somewhat, but when my dose was upped to 6mg I started hallucinating and I cut back to 4 mg. then I added sinemet, 1/2 tablet 3 x a day and life became so much better. I am now on 1 tablet 3x a day and still take the Ropinerole ER 4mg at night and doing quite well but I won't try taking more Ropinerole.

if anything helps me feel up, it is the sinemet and exercise! Keep moving!

twitchy mama

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