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Unread 02-13-2013, 10:45 AM   #1
rsprin2
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Hi I am a 41 year old male. I was diagnosed about a year and half ago but ignored symptoms for about 4 years before I finally went to the doctor. My symptoms have progressed fairly fast I guess from what I have read. In the last year and a half my life has totally changed. I am on not able to work anymore and am on social security. I go to a movement disorder specialist every three months and am currently taking 25/100 sinemet 2 tablets every 4 hours also daily azilect. My MDS has had to increase my dosage of sinemet pretty regularly to the point where I am now. I know everyone has a unique experience with pd. I am not sure how I should be feeling, should sinemet make you feel normal, not tremor of feel stiff and slow. I have read that sinemet can create a honeymoon phase, not really sure if I am in this phase or not. I really hope not because even though I know I am better off on sinemet its not exactly having the dramatic effect iv heard about. If anyone could help shed any light on this subject for me I would truly appreciate it. Thanks
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Unread 02-13-2013, 12:29 PM   #2
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rsprin2 welcome to the forum.

People respond to Sinemet differently. Some people become more or less symptom free for a few hours. Unfortunately it doesn't have this effect on me. But it (or in my case Stalevo) does help. I can, for instance, finger tap at twice the rate when I'm "on". Some people who have a good "on" with Sinemet have a bad "off", whereas if I miss a dose, I can still get about.

Thanks for joining the forum. I hope you find an answer to your question.

John
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Current meds: stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
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Unread 02-13-2013, 01:03 PM   #3
rsprin2
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Thanks for welcome johnt, my MDS tried to put me on stalevo. I don't know if I gave it good enough of a chance. It made me very sick and I broke out in hives, Im assuming the stalevo caused it so on his orders I quit taking it. Kinda would like to give it another try because sinemet isn't really cutting it. Iv heard stalevo increases likelihood of dyskinesia don't know if that's true or not. Do you have problems with dyskinesia
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Unread 02-13-2013, 02:54 PM   #4
vlhperry
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Hi,

I was diagnosed at the age of 30. I am now 59. If the sinemet is not having any effect I would consider asking your Movement Disorder Specialist if he would consider ordering a DAT scan. Look for the question "How is Parkinson's disease diagnosed?" on the link below.

https://www.michaeljfox.org/understa...e-got-what.php


The scan can confirm your diagnosis, or rule it out. But it not considered a Diagnosis tool. If you are on such a high dose so soon, and Sinemet isn't helping, I would want to be darn sure I need the medication. Dyskinesia is a side effect of Sinemet. Make sure your Kidneys are healthy as they can shut down if your dyskinsia is too active. Happened to me. One minute I was writhing on living room floor then Next neniry I was in Intensive care just waking up from a 3 day coma.

Sinemet is a heavy duty medicine. There are many here who work on treating their disease holisticly by diet, exercise qnd food additives.

All my best,
Dianna
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Unread 02-14-2013, 09:06 AM   #5
rsprin2
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Thanks for your reply Dianna. My first appointment that I went to was with a regular neurologist. He was the one who originally put me on sinemet. He referred me to the MDS I am seeing now who wanted to see me as he put "baseline" so he titrated me off sinemet for a short time. Things got pretty bad so he said my issues were definitely caused by dopamine loss. I don't want to make it sound as if Im totally handicapped because Im not, I just don't feel right still tremor and very stiff and sore. Maybe I just have unrealistic expectations, I was just hoping things would get back to where I could go back to work. Do DAT scans differentiate between parkinsons and Parkinson plus syndromes. I am very glad I joined this forum and I really appreciate your responses
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Unread 02-14-2013, 10:24 AM   #6
vlhperry
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No, DAT scans do not quantify Parkinson's disease. It would confirm the Movement Disorder's suggestion that there is dopamine loss. Several other problems also cause loss of Dopamine pproducing neurons. Dopa responsive dystonia, Mulriple system atrophey, and brain damage from a hard hit to the back of the head. Possibly even envirenmental exposure to a toxin. Parkinson's disease is basically a set of symptoms noticed by a Dr. James Parkinson. Any disease or brain dysfunction that causes death of Dopamine neurons is classified under the name of Parkinson's disease. It takes a lifetime of study by movement disorder specialists to pin it down more specifically, and maybe never. I wish you the best and lots of patience to accept the thengs you can not change. Your job title may change, (full time Dad, expert at DBS loss, whatever hobbies you have could be taught at a public school afterschool program. How you choose to act is up to you. The disease will not change who you are, only how you choose to spend your time as you cope with this new challenge.

Dianna
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Unread 02-14-2013, 12:38 PM   #7
NorCalGal
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Welcome rsprin2. Can anyone tell be what this scan that you speak of is? I'm a 51 yr female who was dx'ed in 2009 as "moderately advanced" I take simenet 25/100 4 times a day and still work 6 hours a day. Most of my family doesn't seem to think anything is wrong with me and wonder why I should want to retire. Before I was dx'ed I was tired, stiff and achey but I powered through, got up every morning and went to work...but I digress. I thought Parkinson's didnt show up on brain scans?
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Unread 02-15-2013, 01:04 AM   #8
vlhperry
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Quote:
Originally Posted by NorCalGal View Post
Welcome rsprin2. Can anyone tell be what this scan that you speak of is? I'm a 51 yr female who was dx'ed in 2009 as "moderately advanced" I take simenet 25/100 4 times a day and still work 6 hours a day. Most of my family doesn't seem to think anything is wrong with me and wonder why I should want to retire. Before I was dx'ed I was tired, stiff and achey but I powered through, got up every morning and went to work...but I digress. I thought Parkinson's didnt show up on brain scans?

https://www.michaeljfox.org/understa...e-got-what.php

Go to above link, Click on 5th question, ""How is Parkinsons disease diagnosed?" The responce to the question includes a description of a
DAT scan.
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Unread 02-15-2013, 01:29 AM   #9
Conductor71
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Quote:
Originally Posted by Dianna_Wood View Post
No, DAT scans do not quantify Parkinson's disease. It would confirm the Movement Disorder's suggestion that there is dopamine loss. Several other problems also cause loss of Dopamine pproducing neurons. Dopa responsive dystonia, Mulriple system atrophey, and brain damage from a hard hit to the back of the head. Possibly even envirenmental exposure to a toxin. Parkinson's disease is basically a set of symptoms noticed by a Dr. James Parkinson. Any disease or brain dysfunction that causes death of Dopamine neurons is classified under the name of Parkinson's disease.
Dianna
Wow! Kudos Dianna for telling it like it is; the only thing we likely have in common is brain trauma resulting in selective loss of neurons. I too think it merits talking further to your neurologist; there are so many genetic disorders that look like PD that might be causing your symptoms.

I do want to say that needing to increase your meds more quickly is not necessarily a sign of rapid progression. I never had than 3 hours of relief with Sinemet and/or agonist, so the whole honeymoon thing is iffy at best. We build up a tolerance to the drugs; some more quickly than others.

Finally, another reason that you may get less than optimal control may b e because we lose more types of neurotransmitters than just dopamine. Current research indicates that loss of noradrenalin (norepinephrine) may actually be more responsible for our symptoms than dopamine. Crazy!? it seems but would explain the growing number of young onset people I encounter who end up with normal DAT scans but still have levodopa response to their symptoms. It is maddening how we have all this technology and we still have no real scientific measure of anything.

Facing Up to the ‘New Face’ of Parkinson’s Disease

Laura
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Unread 02-15-2013, 07:13 AM   #10
Aunt Bean
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Welcome to the forum. Know you will find alot of support here. Check out the book by Dr Laurie K. Mischley "Natural Therapies for Parkinson's Disease". There are alot of good books out there, but this one is tops for me. Have a great day Aunt Bean
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