I don't have a tremor. My symptoms are all movement related and I have

problems with fine motor movements in my hands. I was on Sinemet 25/100 (1 1/2 tabs 4 x day). At my last visit I told my specialist that I didn't think the meds worked as I never have on/off times. I saw my specialist on Tuesday after being off my meds for 48 hrs. He is now not sure if I have Parkinsons or Parkinsonism. His plan an MRI. If my symptoms get worse resume Sinemet and he will add Amantadine. If they don't get worse he will put me on Amantadine alone.

Does anyone have a similar condition? If so, what do you take? Does it help your symptoms. Just curious as I don't want to be on meds just to be on meds.

Terri

44 Replies

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  • Terri,

    Usually if they are not sure if you have PD or not they will put you on the Sinemet, if it works you have it, if it doesn't more than likely you don't. I was 42 when I went to the dr. they were not sure if I had PD so of course because of my age, they put me on Sinemet, it worked, I have PD. Maybe the dose is not high enough to help.????

  • hi jennie

    i am on sinnemet for thesecond time and still nothing is improving - i have thought for a while i mmay have something else like MSA or PSP but my neuro syasy no i have avery bad case of parkinson whihc is resisistant to levadopa ?

  • Thanks. I was diagnosed in 2010. Started on 1 tablet 3 x day, increased to 1 1/2 tablet 4 x day last year. I've never had symptom improvement.

  • Wow! You have been on Sinemet for two years and it didn't help? That is strange to me that the doctor kept giving you more and you kept taking it. Anyway we have always heard what Jeni said. If the sinemet works then you have PD. Have you had an MRI before? All the doctors my husband saw when we were trying to get him diagnosed wanted the MRI done before giving meds. I hope your doctor did that too. So many other problems can cause the same symptoms. You could have Essential Tremors, which is having problems with your hands when you try to use them. We have a close friend who has this and has a very hard time doing something which needs fine motor movements.

  • I didn't research Parkinson's except for symptoms after I was diagnosed because I figured if two doctors said it was PD it must be PD. I didn't know about on/off periods until I found this site. No, I wasn't given an MRI by either doc though one is scheduled and I should have the results before I go see another movement specialist for a second opinion on May 16th..

    I had not heard if you took Sinemet and it helped then you had PD until you and Jeni told me today. I knew it was supposed to be the "gold standard" but.......

    I appreciate your response and the information. I hope I find answers soon. By the way what does your friend do for the Essential Tremors in case that's what it turns out to be?

    Terri

  • Terri our friend does not do anything. We try to convince him that there are meds for it and he would probably feel sooo much better but he is one who hates to take meds.

    I forgot!!! He says he does run. He loves to run and feels better after he runs.He said he feels his body loosen up and is more comfortable. But that is all he does for it.

    God Bless you and I hope you find answers. Go to several doctors. We did until we believed the diagnosis.

  • Thanks. I hope I find answers too. I would love to move like a normal person as opposed to a turtle, quit falling, turn in bed, be free of pain, be able to put on my own shoes and socks.......................etc. Essentially what we all want.

    Be well and take care of hubby. I don't know what I would do without mine. :-)

  • Hope this is helpful

    Parkinsonism: Causes and coping strategies

    I was recently diagnosed with parkinsonism. What causes it, and how can I cope as it progresses?

    Answer

    from Eric Ahlskog, M.D.

    Parkinsonism is any condition that causes a combination of the movement abnormalities seen in Parkinson's disease — such as tremor, slow movement, impaired speech or muscle stiffness — especially resulting from the loss of dopamine-containing nerve cells (neurons).

    Possible causes

    Not everyone who has parkinsonism has Parkinson's disease. Other causes of parkinsonism can include:

    Medications, such as those used to treat psychosis, major psychiatric disorders and nausea

    Repeated head trauma such as injuries sustained in boxing

    Certain neurodegenerative disorders, such as multiple system atrophy and progressive supranuclear palsy

    Lewy body dementia

    The role of medications

    For drug-induced parkinsonism, discontinuing the medications that cause the condition can reverse it.

    For other forms of parkinsonism, taking Parkinson's disease medications — typically a combination of carbidopa and levodopa (Sinemet, Parcopa) — can help.

    However, these drugs aren't likely to be as effective for some forms of parkinsonism as they are for Parkinson's disease. Levodopa — which occurs naturally in the body and is always taken as a combination drug — replenishes brain dopamine, and brain dopamine loss is fundamental to Parkinson's disease. However, in other parkinsonian disorders, additional brain circuits besides dopamine may be affected.

    Other steps you can take

    Certain lifestyle changes also may help you cope with parkinsonism:

    Stay physically active. To the extent you're able, try to sustain your normal daily activities, exercise regularly, and incorporate physical and occupational therapy as needed.

    Create a safe environment. If gait and balance become impaired, consider modifying your environment. For example, install grab bars next to your toilet or in your shower, remove obstacles such as throw rugs, and keep frequently used items within reach.

    References

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    AN01178 Aug. 23, 2011

    © 1998-2012 Mayo Foundation for Medical Education and Research (MFMER). All rights reserved. A single copy of these materials may be reprinted for noncommercial personal use only. "Mayo," "Mayo Clinic," "MayoClinic.com," "EmbodyHealth," "Enhance your life," and the triple-shield Mayo Clinic logo are trademarks of Mayo Foundation for Medical Education and Research.

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  • Thanks Susie.

  • hello , its me again

    what type of MRI are you having - is it the one with radioactive injection ?

  • They had not decided that before I left. The doctor had just put MRI so his asssistant was going to check with him before scheduling.

  • Sounds the same as me but only my right hand. I havent taken anything...just try exercise, stretching, eat healthily, and trying to avoid stress and keep busy and smiling. I do brain puzzles, scrabble sudoku etc as well. Walk a lot everyday.

  • Thanks.

  • GOD i wish i could walk - that is all i want to be able to do ....

  • Oh Shasta I am so sorry you are unable to walk, I can still do that and I am so grateful I still have that ability.

  • I understand completely, shasha. Me too!!!!

    The levo/carbo is the only drug that works .......even after 25 yrs. I have always taken less than the dr. perscribed. (I hate taking meds)

  • Me too (8 years) and me too! Although depending on the day, I've had to inch up the last few months from 4 1/2 to 5 or 5/12 out of 6 I was initially prescribed. I love to walk but find I now do better on a very flat even surface. The nearby hospital halls are perfect. I can walk fast and nobody thinks it's strange there. Got a treadmill and it works too.

  • Like you i was told i had PD in 2010. no tremor but slurring ,depression,trouble writing. started on Ropinerol. and now also Sinimet . Cant realy say i feel better slightly worse if anything . awaiting nuclear scan results.

  • What kind of Nuclear Scan?

  • injection then a brain scan . Been waiting for results since Feb . See someone next week at last.

  • Did you get the results of your brain scan?

  • hi jobby

    please report back here your results on your scan - why has it taken so long to get the results ? do you live inthe uk ?

  • HI shasha, i get my results on the 14 may . will gladly report back. i have no idea why its taken so long i live in lincolnshire may be a bit slow in this county !

  • I to have no tremor.started on Sinimet,no difference at all,increased to Sinimet Plus,have put on weight,have swollen feet,still not much different,although did manage to resit driving test and passed ok

  • I also put on weight and have edema in both legs, ankles, and feet. How much Sinemet are you taking?

  • Surprised to hear your symptoms from Sinemet. I too had no tremors . Major problems were stiffness, shuffling gait, back pain...among others.. Started on Mirapex with immediate results. Now have added Sinemet. I lost weight since starting sinemet. I also take Azilect, supposedly to slow progression.

    My neurologist told me that people with PD usually have a hard time keeping weight on, this is why I am surprised to hear of side effects you are experiencing.

    I was diagnosed Aug 2009 at age 48. Can't believe how much time has passed.

    Be Well

  • Its Sinimet Plus 1 tablet 3 times a day

  • Thanks. :-)

  • I was 33 and was diagnosed with PD at age 35. I never had tremors until about the age of 40. My problems were rigidity on one side. When I walked I dragged my right leg. I did not swing my right arm when I walked, I held it stiffly by my side. I could not move my right toes at all and I could barely move my right foot. I was put on Requip and it helped me 100%. It was not until 2 years later that I was actually diagnosed with Young onset Parkinsons disease and started on Sinemet. The Sinemet did help me, however.

    I hope you soon find out what it is. I know it can be frustrating not knowing. People told me it was "all in my head" and that I was crazy. I was relieved finally in getting the diagnosis. I finally knew what was going on.

    You are in my prayers and I hope you get an answer soon.

  • Thanks Redbird. I hope to find some answers next Wednesday.

  • after being on sinamet for a year it no longer helped control my symptoms I

    swithed to stalevo200. Have been doing very well so far. It has been a year.

  • Thank you.

  • I realise this conversation/thread is two years old but it so fits my experience of PD I wanted to find if anyone is still monitoring it.

    I too do not have many of the classic symptoms of PD, (eg, resting tremor) and although Sinemet seems to help I never get the 'instant on' feeling 15-20 mins after taking it that many people describe, after an hour or so things improve thats all. I was beginning to think I was the only person with PD that experienced it this way. If anyone is monitoring this maybe you could reply with some pointers to where I can get more info on this form of the disease.

    Thanks,

    John.

  • first reading, not monitoring

    I have classic Stage 1 symptoms. Diagnosed November 2012. Take no medicine. Feeling blessed compared to the condition of other PWD friends here on this forum

  • I have the same experience of 1 hour slow improvement. I'm a bit off balance when I first get up but nothing drastic at all. I take more about 5 hours later but rarely feel anything much. It's more a preventative. After 8 hours I do have noticeable balance problems. The time varies from day to day and depends to some extent on overdoing things. I began on this dose 8 years ago -have gone up from 41/2 25/100s to 5 or 5/12 of the 6 initially prescribed. I suspect this is not a good form of PK but can't get much info beyond individual variability.

  • John

    We are all different in how we react to meds and also depends what stage we are at. Im guessing you have been diagnosed in the last 2 years? You description is familiar and many people do not have a tremor. There is heaps of info on line. Try

    pdf.org/symptoms

    Parkinson's UK site parkinsons.org.uk/publications

    Or just google your question.

  • Parkinson's Disease news breaks that a drug that could stop or slow Parkinson’s disease (PD) is advancing in clinical testing. , the drug isradipine is proceeding to Phase III testing, the last step before regulatory approval. With a $23 million grant from the National Institutes of Health, researchers will test if isradipine has an effect on PD progression. Previous studies showed drugs in the same class, calcium channel blockers, were associated with lower incidence of PD. When recruitment for this study begins later this year, it will be the most advanced, current trial of a disease-modifying therapy for PD.le

  • Do you know where they are conducting the trial.

  • Thanks. I currently take blood pressure medication. I wonder if I could change to Irasdipine.

  • It is a drug currently used to treat hi blood pressure,yes. Talk to your doc. But don't reveal the real reason. I would even if the dose was wrong or the frequency. What would I have to loose as what I am facing with P.

    I am listing the drug PLUS the ultrasound surgery on my Christmas list

  • tlongmire,

    Do you have movement of your eyeballs such that you have normal up and down gaze with no movement of your head?

    If not then you may have one of the alternatives to normal idopathic PD. If so it would be worth mentioning it to your neurologist / GP or whoever.

    I've just noticed this thread is rather old, > 2 years - still might be useful for someone.

  • I was dx 8 years ago at the age of 50 and have never had any tremors at all. My symptoms are severe rigidity especially down the right side of my body with my hand being the worst affected.

    I am on Madapar (Beneldopa) + Entacapone 7 times a day; Azilect and Pramipexole once a day and Sinemet CR double dose at night time.. If I make sure to take the meds during the day at exactly t he right time then I can often go through the whole day with no or minimal offs, but still wake up in the morning barely able to walk until my first dose of dispersible Madapar has kicked in.

    I am not blind to the fact that the meds will continue to lose their efficacy pretty quickly and I think my neurologist is now considering whether I would be a good candidate for DBS.

    It's a great life!

    Best

    Chanteur

  • You should have had an MRI a long time ago.

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