Early Onset PD - confusing symptoms

HI to all,

my first post here. I have been told by my neurologist that I may have EOPD although have been referred on as they suspect it might be an atypical parkinsonism. The symptoms don’t quite add up although my DatScan did come back abnormal. I have not started any medication yet and what confuses me the most I think is how the symptoms seem to go through stages of being worse then better, sometimes for periods of weeks/months at a time. I had expected that the progression might be more linear in that things would all just gradually get worse as time went on. For example my tremor right now (which is more action and intention tremor as opposed to resting) feels like it is better than it was a couple of months ago. Other symptoms such as my walk and balance however seem to be worse, so as I say all a bit confusing.

Thanks very much and look forward to chatting to some of you on here :grinning:

Hi and welcome to our forum, @Mike1. We have a very friendly and supportive group here and I’m interested to hear from them about your experience compared to theirs.

Everyone’s Parkinson’s is different, and like most conditions, there will be good and bad days. Good days are the easy ones, and bad days are the ones you need to work with to adapt your everyday activities. This article is about someone’s experience with good and bad days: Living alone with Parkinson's | Parkinson's UK. I hope it helps.

It’s OK to feel confused but we’re here for you. If you have concerns, our local advisers can help you on our Helpline: 0808 800 0303.

Best wishes
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Hi Mike 1 welcome I was told by a specialist in 2010 that I had PD. He just said walk to the door and back again, well what you have you won’t die from but you have Parkinson’s. Talk about confusing after playing bowls I would sit enjoying a glass of wine in the sunshine but I had a resting tremor, that’s how it started. Well on low dose of meds and my PD was kept at bay!! that is till 2021 when i ended up trying to tell a concreat slab where to go. The slab won! since then my PD has gotten worse but I am just thankful for the years when I have been OK so all I can say is PD is a slow progresive illness just take each day as it comes. You never get 2 days the same, and don’t argue with any concrete slabs.

Hi Mike

I had this effect too. With symptoms getting better and worse.
I had a tremor (confirmed as dopaminergic with a DaTscan), also hand stiffness, and difficulty walking and was diagnosed with “Parkinson’s and Postural Instability” and started on Madopar.

I noticed that I had varied days and hours when symptoms were better or worse. Eventually I noticed that my symptoms improved after lying down flat for some hours, and I was diagnosed with Spontaneous Intracranial Hypotension caused by a spinal CSF leak.

Parkinsonism is one of a range of possible symptoms of CSF leaks. My hand stiffness and instability resolved after treatment for the leak (epidural blood patches). I also had tachycardia, hypertension, and dyspnoea - which are now better.

I had quite a fight to get correct diagnosis and treatment. When my neurologist dismissed my concerns as ‘Anxiety’, I found a new one who specialises in CSF leaks. Privately at first, but then transferred to his NHS list for investigation and treatment.

My (new) neurologist said that “time will tell” whether I completely recover. I still have a tremor, and tinnitus, and some postural head sensations which are not quite headaches. I am not currently on any medication, though am open to this if needed.