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#1 ases22



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Posted 12 April 2012 - 05:23 AM

I am 33 years old and was recently diagnosed with PD. I have had symptoms for almost 2 years now. It has progressed pretty quickly in the two years. The biggest problems I have at the moment are fatigue, not sleeping and tremor in my right hand. I am finding alot of people do not believe that I have PD because of my age. I have seen 4 doctors and they have confirmed the diagnosis. I am struggling with how to handle people not understanding as well as the everyday obstacles of everyday living. I am also having a hard time finding a doctor that has time to adjust my meds so I can get on the ones that work the best for me. Of the doctors I have seen they all have blown me off when I call and say the meds are not working and it takes 2 weeks or more for them to change it or they dont call back and I have to continue to call and I never get anywhere. So if anyone knows of a good doctor in Northwest Ohio I would love to hear from you. I look forward from learning alot from this forum.
I hope you all have a good day.
Thank you

#2 MarciaJ


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Posted 12 April 2012 - 02:26 PM

HI ASES22, I don't know a good doctor in Ohio. Just the Cleveland Clinic is in Ohio but I don't think that is close to you. If you have insurance try calling them for a reference. On ours you have to use a 'preferred provider' or they don't pay anything.

Good luck finding one that is compatible with you.

#3 Beau's Mom

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Posted 12 April 2012 - 06:22 PM

Hello, and welcome. There is a helpline you can call on this website for referrals to Parkinson's Centers of Excellence. Also, Dr. Okun on the Ask the Doctor forum is always willing to answer questions about any aspect of PD. It would be very beneficial for you to read Lucky Man and Always Looking Up by Michael J. Fox. He was diagnosed at age 29. You can get them from the library. His story is probably similar to yours except for the fact that he has millions of dollars, and most of the rest of us don't. And, please, stick around for awhile. There are a lot of answers to be found in these pages, and lots of experience, strength and hope.Posted Image

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.


First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.


Diagnosed December 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.


Current medications at age 63: Duopa gel via PEG-J tube, 6ml loading dose; continuous dose 2 ml.  Trazodone 150 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 135 caregiver hours per month keep me moving.


Edited 2/5/2016

#4 Mihai


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Posted 12 April 2012 - 09:48 PM

Hi ases22,

I was diagnosed at 33 years of age...diagnosed rather quickly, but correctly, I might add...so it's possible. That was 10 years ago. I'm 43 now. Fortunately, with young onset, the progression of the disease is often much slower than with later onset. I live just west of Cleveland... The Cleveland Clinic is a great place for treatment (that's where I go). Tons of PD research happening there too! It's well worth the drive! Keep in touch.......

Peace and blessings,
Mihai (Michael)
Diagnosed in 2001 at 33 years of age

#5 ases22



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Posted 13 April 2012 - 09:13 PM

I currently go to Cleveland Clinic and I am not happy with the doctor I currently have. It is also a drive from where I live. I think it is a good place I just have not been real happy with the doctor I have or the distance. If you dont mind me asking what doctor do you see?

Thanks for your help,
ases22 -- Angel

#6 newbob10


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Posted 14 April 2012 - 07:42 AM

Angel - welcome to this forum. I'm sorry to hear of your diagnosis, but hang in there, and keep looking for the right doctor for you. I too was just diagnosed (about a month ago) after about two years of tests, tests, and more tests. I have also changed doctors and have found one now that not only sees and tests me, but explains things to me and listens to my concerns. I hope you can find the same. Though the tremors were annoying, my biggest struggle was and is fatigue. For me, Amantadine helped a lot with the fatigue, but not much else. I tried several levels of that (1-3 times a day) and each level reacted differently with me - sometimes making me too jittery, so I settled on one dose a day. Remember that you can't change medications too quickly - some take a while to show benefit, and stopping some meds too quickly can be dangerous. I am now on a new med that is supposed to take 4 weeks to settle in - I'm only on week 2, but hoping for success.

I'm not sure if this is where you are at, but I have gone through a lot of ups and downs trying to deal with possible and then actual diagnosis. One thing that I am learning through this forum and through discussions with my new MDS is that I need to be careful not to let PD define me. This is hard of course because it's all I think about sometimes. I'm sure you can relate. I'm trying to remember to engage with my family, my work, and my friends as much as I can and this helps to re-focus - even if I'm tired.

I will be thinking of you and hope you find relief and a supportive doctor soon. Keep in touch here. You will find a lot of support and friendship.


#7 woodbee


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Posted 17 April 2012 - 02:56 AM

Welcome to the forum. I hope youfind a dr you can work together with. Sometimes it takes time to have new meds take effect it's possible that your dr wants you to try a particular dosage for a while b4 changing things up. Patience is helpful and we all can do our part to help educate the public. There does seen to be big gaps in the overall awareness of this disease and its effects on people your age. Sorry you have to deal with skeptics. Whenever you can manage it , humor also helps.

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