Not diagnosed but recommended Sinemet.

[spuddy]

Hello,

Over the last few years I have suffered from fatigue, cramp in the hands, calves and feet, lack of strength and internal vibrations in the muscles. I have noticed my muscles have become very defined and thinner in the arms and legs.

It was a bit unexpected as Parkinson's wasn't mentioned but my neurologist has recommended Sinemet.

When I researched Sinemet everything relates to the treatment of Parkinson's disease.

Do you think this is a trial to see how I react to the treament before a possible diagnosis?

Many thanks

[Hidden]

Get a second opinion. I went as far as having three.

[wifeofparky]

Sinemet is often used to eliminate PD as a diagnosis. If there is no improvement in your symptoms then they look to other testing to diagnose your condition.

[spuddy]

Many thanks for the replies.

[olpilot]

Before I was diagnosed I had several different things found with a statement from doctors saying but that doesn't mean you have Parkinson's, finally I was given sinemet, it helped and I did in fact have Parkinson's. It is the final test, personally I wish it had been tried sooner.

[jimmydook in reply to olpilot]

Did it work;i have pd recently dgnsd :dont know whether to take meds?

[spuddy]

olpilot, many thanks.

It does feel like the final test! I have had the MRI, lumbar puncture, EEG, ECG, EMG, CT and most of my blood for various tests. My family doctor thought possibly MS but the Neurologist might be thinking about other routes.

[PatV in reply to spuddy]

I went through this torture and was relieved to take the sinimet test and find out I had PD. 10 years ago.

[Pelley in reply to spuddy]

exactly what I went through! Had to find out everything it wasn't before just giving me a couple sinemet and watching for improvement... sort of like re-wiring your house to find out a bulb is burned out!

[Susie01]

I was first started on Azilect and it was night and day difference within three days. That affect lasted for a few years as long as I was not under a lot of stress.

[Susie01]

I was first started on Azilect and it was night and day difference within three days. That affect lasted for a few years as long as I was not under a lot of stress. Sinemet has now been added after trying some other meds in the last 2 yrs.

[jimmydook in reply to Susie01]

Is pd well control now;in a dilemma whether to take meds?

[spuddy]

many thanks

[spuddy in reply to spuddy]

Quick update, I have been on the Sinemet for just over a week and the only thing I have noticed is the cramp in my hands and feet have almost gone. They come back before my next tablet is due and I am only on the startet 62.5 (3 per day). I am still really tired and stiff so it will be interesting to see if these change over the next few weeks.

Does Sinemet gradually help or should it be more intense?

[etterus in reply to spuddy]

Sinemet, carbidopa-levodopa, is usually fast acting plus quickly eliminated hence the need to take multiple doses daily. You might need a stronger dose or other meds to enhance it such as Azilect or capotone. Exhaustion and stiffness might also be enhanced. Try to engage in stretching and fitness walking when possible to improve function. Good luck

[Pete-1 in reply to etterus]

If you have a strong enough dose you will notice a change within about 1 hour. If sitting quietly an hour after taking a dose you will feel a warm glow and relaxed all over as tension is eased.

[cabbagecottage]

my husband as never had that experience in fact for a few hours after taking it he seems to switch off cannot function at all . we hen I tell the consultant they shrug and tell me it's how it is for some people he also were a patch

[spuddy]

Many thanks for the replies, really appreciated.

Update, I recently met my neurologist and I have had my Sinemet increased to 25/110 3 per day and to be seen again in 3 months. I am still having cramp in the hands and feet but this has reduced, dribble from the right of my mouth, swallow the wrong way and internal tremors. The internal feeling is really odd, a little bit like having too much caffeine. When sitting if I move my hand upwards all my arm from the elbow down shakes and both hands seem to move in stages as if something is being forced against them. Both shoulders feel stiff and ache. Sorry, one other thing, I get hot burning sensations like a poker is being pushed into my back just under the shoulder blade. Have you had this?

My neurologist thinks it is dystonia caused by not producing enough dopamine. Not sure about this due to all the other things going on but what do I know? The last meeting she dismissed all the above and just increased the sinemet.

I think I will go for a second opinion.

[Allyn in reply to spuddy]

I think exercise would help a great deal for the symptoms you describe. I do forced cycling (a small unit I bought on the internet for $100) and swimming. I swim twice a week for 30 minutes and cycle 45 minutes whenever I can (sitting at my computer). It has helped me with the symptoms you describe.

[spuddy]

My Doctor has recommended that I stop the Sinemet completely rather than increase until I have a second opinion. So I have eased off the Sinemet until further notice. At the moment, the cramps have come back a little and still get the internal vibration but that is all. He has requested I see the neurologist he had in mind last year so fingers crossed! I will keep you posted and thanks again for all your support.