Just been diagnosed

Hi all.
Been diagnosed with PD about 3 weeks ago but I new it is what I had for months before.
OK with it, at least I have a way forward now and help like this web site.
Not sure if I am in the correct forum please let me no if I am in the wrong place?
I have some questions if you can help?
Just started on Modopar so low does to start with. Not feeling any better at all, in fact probably a bit worse. Is this normal? I have a good book called “Living with Parkinson’s disease” It mentions in it that vitamin B12 may help?
I have Burning mouth syndrome that is driving me up the wall. I have seen a consultant about this and they have prescribed amitriptyline and Titrate but still waiting that to come through. Also have the shakes, wobbles and terrible sleep. Any help, advice would be gratefully received.
Many Thanks.

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Hello Mumm3610 … I am 70 in a couple of weeks. I had a positive Datscan & have been diagnosed with Atypical Parkinson’s [Parkinson’s Plus]. I also have Peripheral Neuropathy for which I was prescribed Amitriptyline, which I found excellent.

Normally, I’m told by my Neurologist, Atypical Parkinson’s does not respond well to medication. I was first prescribed Madopar which I took for 7 days & stopped due to adverse reactions. Then onto Ramipril for 10 days which didn’t work.

I am now on Sinemet also known as Co-careldopa. I have been on this for about 2 months, working up to 2 pills 3 times a day. I have found Sinemet very good…

I also sleep poorly, sometimes not sleeping at all. I also have bad dreams & nightmares more often than I would like.

Things do seem better now than they were.

I also have had atrial fibrillation & high blood pressure & take a total of 12 pills a day which probably isn’t ideal.

Any other questions please ask. I have never taken B12 vitamins.

I have just started a 6 week gym class for Parkinson’s people like me.

Best of luck

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Thanks very much for reply Steve. Very interesting. Just seen on the news that there are now 152000 Parkinson’s sufferers in the UK !!! I think every one of us will have slightly different symptoms.

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Hello Mumm3610 …

So true.

One thing I have found out is that not every medical issue I have is down to Parkinson’s. It is so easy to assume that my / our particular symptom is Parkinson’s … Often we have more than one thing wrong with us. Especially at my age.

For example I have trouble walking which could be either Parkinson’s or my Neuropathy or both. If I hadn’t known I had Neuropathy I would not have been treated for it.

Do not assume ALL your symptoms are Parkinson’s alone.


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My husband was diagnosed 5 months ago and started on a low dose of sinemet- he was the same as you, didn’t feel any better and if anything a bit worse.

They doubled the dose after a week or so and that helped, then after a meeting with the neurologist a few weeks later, it was upped by half again - which is where he’s at now. It’s made a big difference, so I hope that gives you some hope.

I’ve done a lot of research on supplements and have him on so many he reckons he rattles! B12 is one of them, along with various others. Not sure they’re helping,
or whether it’s the sinemet only, but he seems much better generally so I’m loath to stop any of them just in case! Happy share what he’s taking if you’re interested, but I’m not a medical professional so I suggest you do your own research too :slight_smile:

I get all my supplements (I take a feet too) from British Supplements.

I hope the medication starts working for you soon. I take magnesium to help me sleep, although I’ve not researched that in relation to PD as my husband’s sleep is manageable at the moment.


Hi Steve i see from your reply that you have bad dreams some times please get these checked out as most of us with PD get REM dreams it took about 7 years for my hubby to get diagnosed, I have posted about REM on the forum please take a look. I have had PD since 2010 and never had a realy good night sleep i just live with it, It is a problem though when you feel tried going out any where.

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Hi Mumm3610 I take quite a lot of meds started on Re-quip 2mg’s now with other meds with them. I myself think that its trail and error there are quite a lot of meds out there for PD and this is were your PD nurse come in she/he knows which meds go together, each time when I visited my nurse my meds changed, but if don’t get on with any of them tell your nurse, ps if you look at PD UK web site they do have a book all about meds, when you take them/ which ones go with each other ect, hope this helps.

Hello there, I have been in a few clubs over the years, mainly fishing and golf clubs and now I am in this one!
Im 56 and diagnosed just a few days ago,

Cheers, Alan

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Hi Cookies,
We wanted to take a moment to welcome you to our lovely forum community. You’ll find loads of wisdom and shared experience here, along with news, research discussions, art of various kinds, and more than a few laughs. We’d encourage you to have a look around the website, at Parkinsons.org.uk, particularly if you’re looking for older forum threads on a particular topic. (You can easily search using the box in the top right corner.) In addition to this, we have a free and confidential helpline staffed with lovely intelligent advisers who are prepared to help with a wealth of issues. You can reach them on 0808 800 0303.
We hope you’ll make the most of your time here, and we offer our sincerest welcome,
Forum Moderator

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Good evening Cookiesdaughtersdad … Welcome to the club. I was golfing until September & have had to give up & I now play indoor bowls. I had a positive Datscan in June & have Atypical Parkinson’s. I am on 6 Sinemet pills a day which seem to work for me. I was on Madopar & then Ropinirole that didn’t work for me.

You must / may have questions, if you do please ask.

Best wishes

HI Mummm3610,

if you’re on a low dose and it’s not helping you may just need it increasing. Have a chat with the PD nurse/neurologist.

Sleep is difficult, you may find it improves with medications. I sleep better at the moment and dream less.

hope you feel better soon

Hi Pod
Thanks for your reply.
Been on the 100mg Modopar for a week now and seem to be ok. Sleeping a bit better but shakes seem a bit worse. Will see what the doctor says when I order my next batch.
Just got a punch bag, saw it recommended on here. Certainly no when I have been on it!
Onward and upwards as they say.

Exercise is definitely good for Parkinson’s, supposed to slow down progression and it makes you feel better. Keep punching the bag!

There are often PD classes in local gyms although you may be too well for them. Parkinson’s UK has some suggestions. I believe a few gym chains do free memberships for people with PS. In honesty find something you enjoy and do it. It will make you feel better.