I have just been told by gp that i probably have Parkinson’s. I have been reading up on treatments and have scared myself witless about the side effects that are possible. Can anyone help me with this do they always happen
Hi Patrick1,
Please, please don’t listen to what your GP says.
They actually haven’t a clue and are simply guessing.
There are many ailments that it may be.
The only ones who can tell you the facts are good Neurologists, and those who specialize in movement disorders.
Remember, even in the case that you may have PD, you may not need any medication for years.
I have had it for 3 years now and fortunately my symptoms have been mild and I am only going onto basic pills now.
Also remember PD affects everyone in different ways, even though the basics are the same, and that different medications affect different people in different ways.
Honestly don’t worry, of course there are side effects in any medication you take, even flu medication. Your neurologist will guide you.
Hi @Patrick1 I should think it would be very unusual for anyone to suffer from all the side effects. I take 4 different medications and have noticed only one side effect, which is dyskinesia and that only started after taking sinemet for several years! Everyone reacts differently so it’s really impossible to predict.
I do agree with @CliveV though that you should wait for a consultation with a neurologist before worrying too much. Anyway, in the event that it is PD, it isn’t as terrible as it might first seem. For many progression is slow - I was diagnosed 6 years ago but am able to do nearly everything I was doing before the diagnosis.
All the best
Clare
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Hello Patrick1
I see you have already received a couple of replies and please take note. Although it is a natural instinct to read everything you can lay your hands on when a diagnosis like Parkinson’s is suspected - and your GP is only saying probably - it is rarely a good idea because the result is exactly what you’ve found, you succeed in scaring yourself or only remember the blackest of black scenarios which is not the reality. So please, please try not to panic… I agree with CliveV and Singing_Gardner you should wait until you have a confirmed diagnosis from a consultant.
Medication is key in management of Parkinson’s symptoms and it can take time to get it right and that will include taking account of any side effects you may experience but it is certainly not a given that you will experience any…
If you are formally diagnosed with Parkinson’s you may, like many go through a a huge range of emotions, you may be frightened, you may not be able to see any future for yourself or at least not the future you envisaged… All legitimate and part of the process of learning to live with Parkinson’s and you will learn to live with it in your own way and in your own time. You may have to take that on trust for now, but we’ve all been at the point you are now and lived to tell the tale.
So take a deep breath, calm down and wait until you know what your diagnosis actually is before thinking. the worst and making massive and unfounded assumptions about what this means for you. One step at a time, one day at a time, is a far better way to get through this strange and difficult time pre formal diagnosis than galloping ahead making giant assumptions based on nothing because you don’t actually have a diagnosis yet.
Tot
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Thank you for the help. I think given reading up on symptoms and although
I don’t have a resting tremors, the symptoms like stiffness and rigity do fit in with PD. It’s a huge shock . Am
Devastated.I used to be happy, go lucky outgoing person know what I want to do is shut the world. Does this feeling ever go away?
Hello again Patrick1
The short answer to your question is yes it does but it does depend to a certain extent on how you yourself choose to see a life with Parkinson’s if indeed your diagnosis is confirmed.
You don’t need to read many of my posts to know that to me the most important thing is to be positive. I have written often in reply to posts that I never give Parkinson’s star billing. I am Tot first and I happen to have Parkinsons. I have Parkinson’s that’s a fact I can’t change so I accept that but instead I challenge the brickbats it throws into my path every now and then. Another of my oft repeated sayings comes to mind - I have Parkinson’s it doesn’t have me.
Positivity is my way of living with Parkinson’s. I am coming up to the 14th anniversary of my own diagnosis, I live alone with minimal help (which I privately arranged) and just get on with living my life very much in the present. I don’t know what the future holds but then nobody does, so why waste today worrying about something that may never happen and if it does, well I will deal with that at the time.
Having a diagnosis of Parkinson’s doesn’t change the person you fundamentally are. My way is not everyone’s way and that’s fine, we all have to find the way that suits us as individuals. Nor does Parkinson’s mean you no longer have a life. It may not be the one you envisaged or want but to me it’s just takes life in a different direction that’s all. It’s up to me to make the best of my life same as it was pre diagnosis.
At the moment you are grappling with a possible Parkinson’s diagnosis and your life and everything you think is turned upside down. Ir is not an easy time and I’m not going to pretend it is but this period does pass. I can’t tell you when or how long because it is your life not mine but you can have a good life with Parkinson’s if that’s what you want.
Tot
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As I get nearer the dx of PD I have started to look again at the treatments and am terrified of the side effects. I can’t live like that it sounds horrendous especially the OCD it says 1 in 4
Experience this is that true
These are some of the side effects listed as 1-4
Here is a recent list. The first 10 are the most common:
Gambling
Excessive lifestyle
Shopping
Hyper spending
Reckless generosity
Hypersexuality
Extramarital affairs
Suspicions of partner’s infidelity
Cross dressing
Pornography (inc child pornography)
Prostitution use
Fetishism (e.g. bondage, masochism, sadism, paraphilia)
Sexual reorientation
Obsessive masturbation
Exhibitionism
Paedophilia
Zoophilia
Visual hallucinations
Obsessive risk-taking
Punding
Delusions (e.g. grandeur, paranoia)
Threats of violence
Violence
Hi Patrick1,
Sorry but where did you get these from.
It seems that wherever it was, there is nothing short a list of anything and everything they could think of that came into their diseased mind.
Really and truly they are way past ludicrous.
Of course there are aspects that are true, but as you know everyone is different.
These are the ones that may “happen”
Gambling Certain medication may exacerbate addiction to gambling etc for those who are have addictive personalities)
Excessive lifestyle, I’m not quite sure what that is supposed to mean, but presume it would encompass the Shopping and Hyper spending.
I have never heard of these as a symptom. They could apply to anyone who has PD or not.
I would presume the next 3 are all interrelated, but again they are not symptoms of PD.
Hypersexuality
Extramarital affairs
Suspicions of partner’s infidelity.
Really please, please don’t go onto the internet for PD and the like.
It is simply filled with total and complete trash that people make up.
If you feel you want to go onto it, go onto sites like the Mayo Clinic, etc .
But rather speak to your neuro and read the inserts of the medication you take.
The “frequent aspects” and “less frequent” aspects are what you should look at. Everything else is the pharmaceutical companies doing everything in their power to cover their ass.
In fact I am sure if you look enough they will also have a disclaimer from you being hit by a meteorite whilst on their medication.
Hi
I have now got a diagnoses of idopathic parkinsons of what the consultant called a benign type. Can’t find out any information on this has anyone else heard of it
I have idiopathic Parkinsons, it just means unknown cause. I’m the only person in my close and extended family with PD.
The previous writer is correct in that there is a lot of misinformation on the internet and you will get better and more accurate information from this site.
Unfortunately some extreme symptoms can occur but normally as a side effect of some of the drugs for PD.
I have been banned from dopamine agonists such as ropinerole and Mirapexin as I got severe side effects.
I developed obsessive compulsive disorder from taking these drugs. I became obsessed with sex whereas I am normally a shy ‘good girl’ by nature. I was also on the computer all the time writing erotic fiction.
I had 12 books published in 6 months and I was still working full time!
My husband was very concerned and took me to my neurologist who immediately took me off the drug and within a few weeks I was back to my normal prim and proper self.
I feel mortified by how I was behaving even though I know it was the drug and not me.
Please don’t take the drugs lightly. They are very powerful. Some people get great results without the side effects but to others like me, they are dangerous.
If you do take them, let your family be aware of the possibility of side effects as you may not recognise it in yourself.
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I delved deep into my diagnosis 12 years ago, it became too much for my mental state and I suffered badly for a few years, I don’t mix with other sufferers as it’s not good for me.
As someone said you end up with very black ideas of what’s happening