I was diagnosed with PD in Oct 21 which was, of course, a total shock. I’ve always been a physical person, I was working night shifts until mid July involving very physical work for 8 hrs straight, sailing with my husband, travelling, abseiling etc.
Suddenly, I’ve got ‘Parkinson’s’ ( shaky right side of my body, and not working as well as normal) but very quickly my symptoms are also: all over dizziness and overall weakness to where I cannot function. This comes in waves, and can be better ( when I can actually wash the dishes in days work) to intense (when I can do nothing for days except lie on the couch). I’m unable to cook, clean my house, or do anything for more than about 15-30 mins at a time before I get too tired and dizzy and have to frustratingly retreat to my sofa. My GP and neurologist tell me these are not part of PD. Its now a year since I worked, and have hardly left the house with my daughter ( I dont drive either). I can’t walk for long. I’ve read through some of your posts and dont find anyone who’s been in the same situation - most people seem to live almost normal lives in the beginning, whereas my life has come to a stand still. Thank goodness I have a fantastic support system. Can anyone have any advice please?
I can relate to everything you are describing. Shakes, not wanting or able to do anything, getting tired, retreating to the sofa etc etc.
I was diagnosed in 2020, shakes and balance, from what I have read on PUK website, are symptoms of Parkinson’s. From my experience others are loosely related. For example, I don’t want to try prepping a meal if I’m going to cut my finger off.
As I say to everyone, what works for me might not work for you. I take every day as it comes and deal with any hurdles should they arrive. No matter how cheesed off I am feeling I try to adopt the PMA, Positive Mental Attitude.
Hope that helps, there might be other opinions from others on this forum. Look at what they say but as I said before, what works for me might not work for you.
Have you got a blood pressure machine?
Check your bp as low bp can cause dizziness?
I wondered if you’ve had Covid and regardless of Parkinson’s have developed long Covid. The symptoms you describe also sound like fibromyalgia. Do you have a Parkinson’s nurse you can talk to ? Parkinson’s medications may help ? Good luck & best wishes Jane
My husband has had PD for some years now, and I must say these symptoms you describe do not resemble the ones he suffers from. have you asked for a second opinion? So many neurological disorders share similar symptoms, so it would be worth challenging your PD diagnosis.
You are having a tough time, especially as a previously sporting type. Be kind to your new self. Best wishes.
Whilst some of what you are experiencing may not be typical of Parkinsons, the reason this disease is such a pain in the butt is because Parkinsons affects everyone differently and trying to figure out what is Parkinsons and what is something else can be difficult.
Some Parkinsons agonists can cause side effects so do have a look at that lovely looong information sheet and see if it could be something you are taking.
My OH suffers from postural drop - he has slightly low BP anyway but the Opicapone he takes drops him too low and so he constantly feels dizzy and often falls because of it.
All I can say is dont give up. This is no way to live your life. You are right when you say that most people do have a reasonable quality of life with the right Parkinsons medication and although everyday is a struggle it is manageable.
If you cant get your GP to investigate I would ask for a second opinion…same with your Neurologist.
My husband was dx at 41 so we have been on this boat for 20 years now…we have moved Neuros twice because we weren’t happy and we have finally landed on our feet with our current one who has solved a lot of the little things and has improved my OH quality of life immeasurably.
You know your body, and if you don’t feel right then keep on asking. It doesn’t sound like anything Parkinsons related - it sounds like something else is going on but Im no MD so I think your best bet is to go back to your GP and if they dismiss it again- vote with your feet!
Has the neurologist diagnosed PD? In which case he should be seeing you frequently to come up with a treatment regimen. A part of this could be carbidopa/levodopa. If the neurologist has not diagnosed PD he should be testing accordingly to find out what it is. What you don’t want to happen is for you to become “parked” with no strategy for symptom improvement.
So sorry to hear how you are suffering with this!
My Mum has been diagnosed for approx 16yrs now. Apart from the occasional tremor, tiredness, lethargy and dizzyness has always been her major symptom. You have already received some great advice in the posts above which I agree with.
It has taken a long time, lots of different drug combinations to try and get the best ‘fit’ for mum. I hope that either the neurologist or Parkinson’s nurse can find something that is suitable for you as you obviously have no quality of life at present.
Wishing you all the best, let us know how you get on.
Hi Mango1, I’ve been officially diagnosed two weeks ago with a DAT scan, but I have extremely similar symptoms as yours for two years already… They don’t fit in Parkinson’s (or anything). My neurologist didn’t expect Parkinson’s, as the only symptom was right-side motor issues (basically bradykinesia and rigidity)
But I had a period of severe fatigue probably caused by hypothyroidism two years ago, and simultaneously the motor symptoms appeared. (Almost instantly, and at the current intensity, not gradual at all)
The hypothyroidism disappeared, and the fatigue too but later in 2021 I had severe weakness, dizziness, confusion when I “consumed” too much energy (physical or mental effort, cold, alcohol, …), which comes in waves and then disappeared after two months. It reappeared shortly after the COVID vaccine shots, so I attributed it to a COVID post-viral thing, but since then it has come and gone again…
Have you had any success in your diagnosis? Do you notice other similarities with my experience?