I’ve been experiencing tremors for 2-3 years now.
Following scans I have been diagnosed with PD. The consultant has started me on Sinemet, low dosage as I have been referred to see geneticist and movement clinic at kings in London. My consultant wants to be certain re diagnosis. Due a review in 3 months.
Is this the norm?
Thank you in advance.
Hi @Newbie1975. Welcome to the forums. You’ll find this a very friendly place and you are sure to hear very soon from other forum members who will be able to share their own experiences.
You can also contact our Helpline and Local Adviser Service on 0808 800 0303 or email: [email protected] where we have specialist nurse advisers who will be able to discuss your concerns. Our helpline and local advisers can also link you in to support in your area.
Meanwhile, you could take a look at Newly diagnosed with Parkinson’s which answers many of the questions you might have.
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well, for me when I was 1st diagnosed my neurologist put me on Requip (Ropinirole) for movement, and Amantadine & Propanalol (beta blocker) for tremor, all of which worked pretty well for me for the 1st couple of years. He held off on the big stuff like Carbadopa/levadopa (Sinimet is a new time release type) until I really needed it (now I’m on a low dose). My understanding of this approach is it is deemed more conservative, but perhaps your neurologist feels you are further along. or perhaps you should get a 2nd opinion. I can make additional what I think are imprortant recommendations to you, but let’s start with that and when you would like more, let me know. And Welcome!
Hello and welcome. When you ask ‘is this the norm’ whilst it is of course a perfectly reasonable question to ask it is not that easy to answer. What you need to understand is that there is not actually a definitive test that says you have Parkinson’s. A diagnosis is made on clinical observation and judgement on your meeting certain elements found in Parkinson’s. It is not therefore unusual but not necessarily so that scans and/or other referrals are made to confirm diagnosis. There are several neurological conditions with similar symptoms so it can take time to get a confirmed diagnosis. Try not to worry too much. The early days can be difficult, stressful and hard not to think the worst. Your brain going into overdrive is probably your biggest enemy just now. I know that’s probably not what you want to hear and three months can seem a long time but they and you need to be sure of your diagnosis. May I suggest you use the time to note any changes to your mobility, general functioning and mood this information can help with the diagnostic process. Also note any questions you have in readiness for your appointments - it’s easy to forget your questions once you’re at the appointment. Good luck and take care of yourself. You will come through this early stage and things will settle.
It seems to me that every neurologist has their own ideas on which medication to start with. I was put on rasagiline for the first couple of years and then asked for something more last summer as I felt my tremors were seriously impacting on my quality of life. My neurologist wanted to prescribe a dopamine agonist but I didn’t want this based on my own personal research so she prescribed sinemet instead, which has worked very well for me.
Hi newbie1975, as tot says there is no norm and it seems everyone can experience different intensities of various symptoms. I was put on Madopar for a month to see if it made any difference before was officially diagnosed. Being on this forum has made me realise other symptoms I had but didn’t realise were related to pd. all the best
Thanks for you comment. I haven’t logged in for a while as I found denial works well but have to face the music at some point. My husband says he’s noticed I don’t have a resting tremor so much.
Have made a list of questions already.
Hopefully tier 4 won’t affect my referrals.
Thanks again. Xx