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Using Carbidopa Levadopa for diagnosis

Early onset parkisons Sinemet

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#1 metfan31

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Posted 25 August 2013 - 01:27 PM

This post is also in Young Onset Forum

My Doctor suspects Parkinson's and wants me to take Carbidopa Levadopa to make final determination:

How will drug effect me if this is not Parkinson's disease? What will it do if I have PD? How long/ how many doses will it take before I should notice a difference? So far at 1/day for past two days, increasing to 2/day next week, and then 3/day until follow up visit. Feel dizzy and tired for an hour after taking and then feel calm and more stable for a few hours, and then return to base-line so far.


Additional Details

I did ask my doctor pretty much the same thing, and was told if it is PD the medicine will help me improve, if it is not it won't. Also said that if I get worse to stop taking and call immediately. Looking for someone with first hand experience, preferably with early onset PD as I am in my 30's and finding it hard to believe I have an incurable disease that will slowly make life more difficult.

Edited by metfan31, 26 August 2013 - 04:40 PM.


#2 Tracy

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Posted 05 September 2013 - 08:54 AM

Another option could be to ask your dr to order a DaT scan. This is a scan that shows dopamine levels. My mom was diagnosed and in order to confirm her drs suspicions he ordered this scan which she will have tomorrow.

#3 metfan31

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Posted 05 September 2013 - 09:40 AM

Hi Tracy I had a DAtScan back in July. Unfortunately it is not a 'sure thing' for Dx of PD just yet. FDA only approved it in the US last year so many radiologist do not know how to read it percisely, and the margin of "acceptable range" for a 'normal' DAtScan varies greatly. For example my DAtScan clearly show one side is smaller than the other and neither is a big full lima bean shape expected in healthy normal brain. Mine is dot shaped with a thin line coming down. Because of the line going down the radiologist read mine as normal "coma shaped" and the variation in size from left to right was not great enough to be considered 'abnormal.' Bottom line: I'm in my 30s and my DAtScan looks like a healthy person in their 60s so my Neurologists feel that it neither confirms or refutes a PD Dx, and that is why we are trying Sinemet to see if it helps. Being on the med two weeks now I feel so much better that barely remember what it felt like before I started taking it, and basically we think it is working but going to give it more time before making Dx official. I hope your mother has better luck getting answers from the DAtScan.

#4 Tracy

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Posted 06 September 2013 - 05:04 AM

Thank you so much for clarifying this on the scan! You make a good point.
Have the meds helped your shaking/pd symptoms? Any unpleasant side effects? I am so glad to hear that you have experienced good results! I am part of a Facebook group as well, and I have heard VERY good things from a program called Delay the Disease. It's an exercise program. I have also heard the bicycling is helpful.

#5 metfan31

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Posted 06 September 2013 - 07:42 AM

The meds have help with almost all my symptoms, when it is in my system (about an hr after taking) I have very few tremors. There are a couple side effects I had that I have since been told are normal. First week of taking Sinemet it would make me nausious and decrease my apetite for as much as an hour after the dose. This gradually got better with each dose, and I no longer expirience it. The other thing that I found unpleasant was my joint pain and stiffness almost seemed to return with avengence when the drug wore off. Both My doctor and the moderator of this web site in 'ask the doc' forum both explained it as normal wear off of the med. My doc even said it is not that I'm more stiff but just that I notice it more due to the contrast of not being stiff.

I have read a lot about the benefits of exercise and would recomend that anyone with PD do whatever activities they can tolorate. Bicycling is a very balanced work out and I enjoy it myself, I would only caution that PWP are not as stable as they once were, so have her take her time and wear a helmet.

I'll have to check out that FB group but for now I'm keeping my condition private from those who know me personally except a few close friends. How did it go with the scan yesterday?

#6 warrenscott.

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Posted 06 September 2013 - 03:25 PM

Here is my experience. Went to neurologist to see if modern science could help active tremors. Things got complicated. The neuro claims I am deveoping Parkinson's and puts me on Sinemet, though he thinks the pd is exacerbated by medications. He does not consider it secondary parkinsonism because the tremors started six months before I ever took any neuroleptics. So far so good. But the neuro decides to keep me on the medications that may be enhancing the deceleration's effects and rob me of the only way I could rule one possibility out. So I went to another doctor and he took me off the neuroleptics. My tremors improve quickly but all other symptoms linger, some getting worse after that. My neuro put in my records that Sinemet gave me a positive response which was never true at all. I will never know for certain perhaps until five years or so, just exactly what the problem is from because the neurologist did the most stupid thing you can do if you are unsure of the diagnosis and you actually care if the patient gets better. Meanwhile the secondary symptoms continue without discouragement. Meanwhile the movement specialist I have been referred to is dragging his feet in a maze of confusing office clerical mistakes and incompetence. This is how even one of the best hospitals in the U.S. conducts their business. It has been three weeks since I requested a referral to no avail. There is no end to the requirements they are making for me to do. All I wanted was an appoitment and now I am told that I will not get one until a month has passed since the referral was made. I want to know if the sinemet is responsible for helping the tremors and why are the other symptoms hanging on without any slowing them down. Or is it because of the withdrawal of the offending neuraleptics? Both methods concurrent there is no way of knowing to my brilliant neurologist in Bowling Green, KY. Educated at Harvard School of Medicine might mean something to someone, but not to me. Sinemet can help you if the conditions are not like mine. I will never go off it, because there is no way in the world to know what is really going on in my disease. And to withdraw it now would mean less effective, if effective at all on it's readministration. People with an whose diagnoses is cloudy need to know all this. Most parkinsonism is secondary from the taking of medication that causes lesions in the brain comparable to other types of it like acute encyphilitus, TIA's and Strokes, Toxic substances and a very rare street drug like XTC. Idiopathic parkinson's is so amorphus and of isolated form unless perhaps derived from the extremely rare genetic mutation type. Sinemet would not have a positive effect on secondary parkinsonism that was more than marginal, but every body responds to any drug in its own way. So the diagnosis I seek out is the one from the movement tests. Having REM sleep disorder, OH and genetic factors support my possibly having PD. But I took offending medication for a decade and a half that would be hard to ignore. Who knows?

#7 eddie sky

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Posted 06 September 2013 - 06:45 PM

Funny you should post this today. I saw my doctor today (second one) who thought I might have Parkinson's and gave me the same Sinemet test. Just picked up the meds and am going to start tomorrow.

#8 metfan31

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Posted 06 September 2013 - 08:06 PM

Warren & Eddie,
I am going to try to be an optomist here, most neurologist would tell you to stop taking sinemet if your tremors increase. What happened to Warren sucks, but I cannot see that as common. Eddie in case your pharacist or doctor forgot to tell you, if your tremors are worsening follow/read the side effect warnings that they gave you, and stop taking it until you talk with your doctor.

#9 eddie sky

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Posted 07 September 2013 - 04:54 AM

I just took my first dosage about 40 minutes ago. I don't know if I am experiencing a placebo effect or not.

Did anyone notice any type of changes with the first dosage?

#10 metfan31

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Posted 08 September 2013 - 07:36 PM

Eddie, my first dose gave me a calm feeling about 45mins after taking it, considering I was getting very nausious leading up to that I doubt it was placebo. It eased my symptoms but not much. The more doses I have taken the more each dose seems to last and impact my symptoms. I no longer get nausious, or notice any real difference after taking it. This all said I have been told by 2 different Doctors that if PD symptoms are stress induced, placebo effect is possible. My advice, don't watch the clock, if you are having symptoms write them down and then note the time.

#11 sarahjo

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Posted 10 September 2013 - 11:56 PM

eddie, I had an a response to the sinemet 45minutes after my first dose, it only lasted about 5 1/2 hours then started wearing off, now I am taking one 25/100 three times aday and 25/100 cr at 9pm yes its been amazing how different I am. how are you doing now its been a few sense you started meds.?

Edited by sarahjo, 10 September 2013 - 11:56 PM.






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