Not diagnosed but worried


#1
Hi...

I haven't been diagnosed but am worried. I am 41.

Over the last 6 months I've had about half a dozen episodes where I wake up whilst physically acting out my dreams. Kicking out, almost actually strangling one of our dogs, lashing out and knocking things off the bedside table, lunging out of bed to tackle someone in my dream. There have been 3 in the last 2 weeks.

I was a little worried so googled (as you do...) and found REM behavior disorder and the high percentage of people who go on to get Parkinson's.

Reading on I started ticking off other things that have happened over the last year or so, my sense of smell dramatically reducing, feeling dizzy and faint on standing, in the last couple of months ongoing neck pain and tingling down one arm, a slight tremor in my left forefinger. Feeling overwhelmed and freezing to the spot momentarily especially in busy places. All these I had noticed but not put them together.

I've been told I have fibromyalgia so already accept the pain, fatigue, cognitive issues along with depression and anxiety.

I don't like going to the doctor at the best of times (was told when I was 38 that me feeling dizzy and almost fainting was down to my age!) and I don't want to sound like a hypochondriac going in convinced I have something...

Any advice or thoughts?

thanks :)

#2
Hi Hermetical and welcome to the forum,
It's true that several of the things you describe are associated with Parkinson's. The sense of smell thing is a case in point. I lost my sense of smell and thought nothing of it a couple of years before any other symptoms made themselves apparent. I was diagnosed with Parkinson's 8 years ago at age 39.

Parkinson's is however hard to diagnose with certainty in large part because all the symptoms can be caused by other things too. If Parkinson's is suspected a doctor is likely to run a series of tests primarily to eliminate other possible causes. If nothing else is found then Parkinson's may be the answer.

I perfectly understand that you are worried by your symptoms. The inescapable advice is to get along to your GP and get checked out. This should help put your mind at ease and you might just find that the cause of your symptoms may be curable. Let us know how you get on.

I hope that helps

Elegant Fowl

#3
Sorry for getting your screen name wrong :-)

EF

#4
no problem, I haven't done enough of the Work to call myself Hermetical!

and thanks for the reply...

#5
Hi, Welcome To the Forum. Love Bliue Angel x

#6
thank you :)

#7
well, when I ended up mentioning Parkinson's I was told I was too young to fit the normal profile (41).

I initially just mentioned the sleep disturbances which the GP felt may be down to reducing Amitryptiline, even though they started months before.

Faint/dizziness on standing - took blood pressure sitting then standing, said it was fine thought the symptom might point to (I think this is what she said) Postural orthostatic tachycardia syndrome, then said there is no treatment, just to make sure I take care on standing, drink lots of water (mentioned that I drink a LOT of water already due to permanent dry mouth).

I mentioned other things, very reduced sense of smell, slowing pace of walking, wobbles, freezing in busy situations, the small tremor in left index finger.

I reitereated the overwhelming fatigue and pain, she knows about the depression, low mood and anxiety

I forgot to mention excessive drooling when sleeping, the many cognitive issues I have (which I put down to fibrofog), the neckpain and tingling arm I've had for a couple of months.

GP asked about small handwriting, but I don't write that often, asked about my voice but I am quite quiet by nature.

Even though she was kind I feel like an idiot, one of those people that goes to the GP thinking they have every disease known to mankind.

#8
if i were you, i would find the best pd specialist in your area and arrange a private consultation. it costs a bit but you are never going to get your gp to give you a referral now, the harder you push the more she will resist.

#9
thanks turnip

I'm beginning to doubt myself now :rolling_eyes:

#10
doctor have far more education than we will ever have in human biology, but we have much more information about our own situation than the medics have. i complained about symptoms for 5 years to very good gps before being diagnosed by a physiotherapist. gps don't cope well with statistical outliers and unusual conditions. have confidence in your own interpretation of your condition and take it to someone who has an open mind on the improbable but possible.

#11
Hi Hermitical!
I read about my symptoms on the internet and connected them to PD not long before my GP appointment, so when I went in I told him I have the symptoms of Parkinson’s. He looked at my face (a bit bland, he said) and moved my arms looking for cogwheeling.

He ordered a CT scan (which I later had converted to an MRI) and gave me a referral to a neurologist.

I would have thought that your GP should be able to order whatever scan is used in your area to help diagnose you, and give you a referral to a neurologist or other appropriate specialist, just by your saying you want them. I have done that with my GP before. Good luck!

#12
Thanks Sheryll, will bear this in mind but I've never been good at demanding things!

Woke myself up this morning by enacting the wrestling in my dream :rolling_eyes: