I believe my dad has had a mild case or slow progression. His dx was in his 60s.

There is a rare but scary condition known as "Narcoleptic Malignant Syndrome" or NMS. NMS may occur in people taking dopaminergic drugs (such as levodopa) for Parkinson's disease, most often when the drug dosage is abruptly reduced. According to a book I read by Dr. Grimes, stopping an agonist like ropinirole cold turkey could lead to this result. The usual advice is "titrate up" and "titrate down".

I did meet a man from Calgary once who had been diagnosed with PD 12 years earlier. He hadn't increased his sinemet dose for 10 years. He did not present with any outward manifestations of PD.

I believe the statistic is that even for patients of Neurologists, at autopsy they find that 1 of 5 or 20% of patients with a PD diagnosis do not show any signs of PD in their brains.

Clyde

Hi Nigel and Janette,
I know another lady with PD who couldn't understand why our misdiagnosed mutual friend never seemed to have an 'off' time which as other parkys would
know is highly unusual.
She was seeing an MDS in a big teaching hospital when diagnosed and treated by him through most of her Sinemet taking yrs too which was approx. 10 yrs.
She now has a diagnosis of Multiple Sclerosis which I'm guessing she had then too.
I remember the Sinemet challenge test was given to her and she was hospitalised at the time so her MDS would just turn up and see how she was at random times.
I often think since this unravelled that the power of suggestion to her that Sinemet may have played a small but significant part in her relief of her supposed PD symptoms at that time.
I looked to her for support in my early days of diagnosis at 35 and felt for a long time after this unravelled annoyed at both her and her 'top Dr'.
Regards

I'll admit I am feeling so good I do think "is this all in my head?" Then I mess up and forget my medication dose, and realize "uh oh what happened" as I seem to go from 40 to 80 years old.

Comtan is used to boost the on time of sinmet. It is one you do not want to split (if there are scribe lines like sinmet, safe to split.... no scribe line it is not meant to be split).

Slow change is good. So drop just one dose of comtan for a week.... then a second comtan... then the third. Give yourself three weeks with no comtan before making any other changes. TALK TO YOUR DOCTOR First before any change.

Daily journal really does help. I was doing 3 x daily of 2-25/100 sinement and one 200mg comtan. I would wake up in pretzel man mode around 1am. Finally added a fourth dose around 10pm which helped making it through the night. I had missed what was going on, but looking at the journal it was obvious.

What part of New Zealand? 30 years ago I took my "push bike" and went cycling both North and South Island for the month of November. Had the time of my life, solo ride but many great memories of wonderful country side and wonderful people!

Tom

Hi Janette

I had a bet with myself that you would have had a period of chronic stress before diagnosis. Im not medically qualified nor have I qualifications or experience to be a professional researcher but over the the last 6 years Iv continually been looking at stress as a causative factor in the development of Parkinson's .I believe there is a subset, associated with young onset which involves serotonin as much as dopamine and could be a case of dopamine supply fault rather than dopamine depletion. By coincidence this stress/serotonin/parki's idea is currently finding support amongst the research community. It may or may not be one explanation for cases such as yours.
I too was diagnosed after years of chronic stress, 2 years ago my wife went through a horrific ordeal with cancer, after 4-5 years of managing on only 6mg of requip xl I suddenly felt much worse and started increasing the meds. However I don't get a great deal of benefit fron the increase but do get a great deal of grief. The stress in my life is still very high and I firmly believe that to be the root cause of my symptoms and when it finally eases I cant wait to see how or if I get significantly better.
All the above was in part triggered by a post, I believe on this forum, years ago concerning a lady who nursed her terminally ill mum, lost her job and house as a result.....was diagnosed with PD, put on meds, 10y later her life was improved, she moved across the states and was told by her new neuro she didnt have it. All Im trying to say is we have to find the answers ourselves and there is so much undiscovered, so many differing opinions.

The best advice I have ever received regarding Parkinson's was from my GP, (Ordinary, general everyday Doc) who said "Nige, in this game it's important you make your own treatment choices, only you can decide whats best for you)

Wishing you the very best

Nigel

Hi Tom, Thank you very much for your advice, I have started a journal on my thoughts - Parkinson's or NOT!! and I have to decide my future journey into the unknown. Being "What will happen if I come off my PD drugs" Someone said to me, "Why change what seems to be working for you now???" Well, good question, hey! But there still is my question, "Do I actually have Parkinson's Disease or not" and I feel the only way I will know is if I come off my drugs". Oh boy, what a dilemma! But I am very strong and what ever I decide to do, I will do it.

Comtan/entacapone, I have only been on for about 1 year and the Pharmacist I saw said the same thing, come off this first, slowly, one at a time. Have you done this? Did you have any bad side effects? I would love to hear.

I get dyskinesia in the form of toe curl, mainly in my left foot. My Neurologist could not answer my question - "Is my toe curl a symptom of PD or a side effect of Sinemet"? I asked him 3 times at my last appointment and he said he just does not know the answer. Would be great to hear your opinion on this, Tom and Nigel.

Tom, I live in rural Canterbury, Springston, not far from the earthquake ravaged city of Christchurch, NZ in the South Island. We haven't had a big quake now for a couple of years which is good. Thank you for asking.

Kind Regards Janette

Hi Janette

I think the toe curling is dystonia if a recent thing and no change in meds (incl timings) then possibly a PD thing, if you've had it on and off over the years then possibly a meds thing.
I wish my neuro was as honest, the answer he gave was likely the truth as the side effects of overmedication and intermediation are often the same,a worsening of Parkinsonian symptoms. Many patient leaflets actually list worsening Parkinson's as a possible outcome of taking Parkinson's medicine ! Yet nobody says 'we should look at that'..
Tom has found there is a fine margin between over/undermediation and my recent experience,while I'm definitely Parkinsonian and dopamine responsive , has lead me to question the suitability of agonists as a treatment option for me.
I was on 12mg for 5/52 and at the 5 week Mark I had to be helped from a chair, I'd crash and become spaced and like a statue,my insomnia is due to Parkinson's iv bbeen told.. it's not, its requip. How do I know ? Because on 6mg I could sleep in 6h blocks, 8h I managed 4h, when on 12mg I was down to 2h.. Now I'm on 10mg I manage 3h case proved.
Iv spent 7 weeks on higher dose requip and apart from being able to wash my hair with my left hand again, woopy doo ! I've never been so Parkinsonian and like you I'm wondering how I'd be on 6mg. This is the dose prior to my wife's cancer and I wonder if stress related ,now she's well again, I just don't need the agonist increases hence they make me worse.
In your case, considering the dreadful ordeal you went through prior to Parkinson's, I would imagine it would take years to recover and maybe now is the time you're in a good place.

Keep in touch, you're obviously an intelligent, resilient lady so I know I don't need to say it again but please tread carefully.


Nigel

Issi_8,

Welcome to the forum.

It sounds like you're doing well for someone 10 years after diagnosis. When you say you lead a "normal life", do you have any symptoms? Would you pass for a healthy person even when you are at the end of a dose?

Regarding drugs, it seems to me that you are on a typical regime. A good measure of the power of the drugs you take is "levodopa equivalent dose". This adds up all the drugs you take in a day and gives a single number estimating the amount of levodopa (taken with carbidopa) that would have the same effect. In your case, I would estimate an LED of 640mg, coming from ropinirole (240), sinemet (300), entacapone (100). In comparison, I'm also 10 years after diagnosis, and my LED is 820mg.

Before making any changes, I'd advise measuring your current symptoms. I find the side-to-side tap test useful. This times you repeatedly typing, using just one finger, q followed by p. There's an on-line version of this at:

http://www.parkinsonsmeasurement.org...eToSideTap.htm

As you do the test you learn to do it better. So, do it at least 10 times before using the results.

You can see whether your drugs are having an effect without changing your dose. All your drugs act only for a few hours. So, when you get up they should be mostly clear from your system. For a PwP one would expect that after you take the pills their effect will gradually grow, then plateau, then decline. To see if this is the case, take a reading every 15 minutes for at least 3 hours. See:

http://neurotalk.psychcentral.com/thread183360.html

John

Hi John,

Thank you for taking an interest in my case. Yes I do lead a normal life. The only symptom or side effect I have is dystonia in the form of toe curl mainly in my left foot, but sometimes in my right foot and it only appears when I am due for another dose of my drugs, like 3 times a day and if I am quick enough taking my drugs, I don't get it at all. I have NO tremor, no slowness of movement, no loss of balance, never have I frozen, or have a blank face, my speech and writing has not changed and I smell all the spring flowers that are in my garden here at the moment. Spring here in New Zealand.

So, my day is normal, yesterday I got up at 4 am, which I do every day, I take my first dose of meds at about 5.30 to 6am. Then do housework, I go to work for two hours most days and clean peoples houses, then come home, make lunch then spend the rest of the day in my huge garden, yesterday I mowed the lawns which takes about 3 hours. Then inside to cook tea.

You see my dilemma and why I am questioning my diagnosis. I have taken your test, so results after 5 times practising at 4 am this morning with no drugs taken yet are left - 29.83, right - 33.55. Drugs taken 5.30am, next test 6am left - 32.02, right - 35.56. I think these results are quite high?? I had no trouble with my co-ordination.

Kind Regards Janette

Janette, sounds to me like you have ldopa responsive dystonia. Have you ever taken artane?

http://ghr.nlm.nih.gov/condition/dop...nsive-dystonia