First off, hi everyone. I can't lie and say it's good to be here but it's been reassuring and helpful to read a lot of the discussions and I'm looking forward to getting to know you all.
I've been having odd symptoms for a couple of years now - initially I put them down to a combination of anxiety, stress and the menopause - all of which I was suffering from. But a year ago I Googled the term "tremor" and found I had all the main symptoms of PD. That sent me into a tail-spin of anxiety and panic - not pleasant. I cried for a whole weekend and on the Monday rang my GP surgery to beg for an urgent appointment.
They let me see a nurse, who said I was anxious and put me on anti-depressants, which I took for several months - needless to say, they didn't help much so I came off them at the beginning of this year. My symptoms have got worse over the past three or four months so I went back to my GP and I now have an appointment with a neurologist in early May.
My question is: what can I expect at this appointment? Will he/she give me a diagnosis there and then, or will I need tests?
hi welcome to forum
my first appt she examined me then asked me what i thought i had wrong with me . yes she agreed ...parkinsons. explained what it was , started me on tablets with explanation of side effects . gave me this webste info . then had appt with nurse 3mths later
think it varies how bad your symptoms are wether you start treatment , and some get scan to rule out other things. mine was clear cut so never had scans
Have to admit I'm scared senseless. I'm really not sure how I'll cope with the news.
My first visit to the Specialist involved him asking me to do a few things like lift up my arm, wiggle fingers, close my eyes. Then he asked me if I wanted the truth, I said yes and he told me I was young to have it but I had Parkinson's. He then referred me to a specialist who dealt with Parkinson's more often than him and I was put on medication. I knew I had it but it was a shock at the time.
Good luck with your appointment.
My first appointment with the neuro.
the first thing he done was history, taking notes too build a picture, work,family history ect. then he asked how i noticed things over the course of time, he could see my tremor(but that in itself isn't a diagnosis) so a examination followed, observation of how i walked,turned,gait,posture, my expression, my eyes, hands at rest , reflexes, finger too nose, palm too palm, dexterity , slowness of movement ect.
and then we sat and chatted, he asked me had i heard of parkinsons and then he said at the core of my problems he thought parkinsons, but around the edges i have other problems. No deff diagnosis that day.
I'd had all the blood tests & tests at the Gp's (Including how yours mood??) to get referred too this point.
I was then sent for another blood test for Wilsons disease (copper poisoning) essentially as some symptons mimic PD.
then nerve conduction tests i believe partly too rule out MND.
then a MRI which came back as expected clear.
And finally a Dat-scan which confirmed patchy reduced uptake , hence PD diagnosis.
All of this took the best of a year, so dont be disappointed or afraid if you don't get a def diagnosis on the first visit.
youre not alone in being scared ,i was total mess .think i felt better once i knew and could deal with it . but it takes time to get your head round it all .i bounced off my friends they were super support network getting me out of house.its now 9 mths on and am now feeling as if medication working and feeling better. iis certainly not a quick fix but you adjust and cope .talk to everyone you can ,information i feel is the key .
stay strong as you can xxx
It sounds like everyone has different experiences at their first appointment so who knows what I'll get!
I've just had two days where my symptoms were about half as severe as they'd been - I felt great! But today it's back to normal - or what's now normal for me.I feel pretty depressed, TBH.
I am sorry you are going through all this. At such times I try to live in the Now and take each day as it comes. Not easy and I was horrified when diagnosed with PD. But I do try to remember to be gentle with myself and breath deeply and be with those I am most relaxed with - if possible.
After diagnosis it was some months before I gave in and took medication.
If you are able to walk try to get out and walk as much as possible. If you have friends and family, get someone to walk with you. And once daignosed walk as much as possible.
I hate walking. I have a 20-minute walk to the train station every morning, and another 20-minute walk to work from the station at the other end - and, of course, I have this in reverse at the end of the day, so I am walking a fair bit.
I can walk reasonably okay but it's uncomfortable and frustrating - I've always been a quick walker and now little old ladies are overtaking me. Uphill.
Strangely, though, I have no problems exercising in the gym, even on the treadmill.
I used too like walking i'd walk for miles, i walked down too the beach a mile away yesterday for a bit of fishing, it used too take me 10 mins, it took me a hour yesterday , the other day i took my prescription down too the gp practice it's 100 yrds away on the way i chatted too a lady or i should say i toddled behind a lady chatting, she was on crutches lol she beat me too the surgery . today i'm dead tired from yesterdays walk my feet are very tender and i ache all over.
Hi Sea Angler,
I like walking too but my family try to transport me everywhere! So when I get the chance on go the trainies(scouse word) and I am off. Like your good self I am slower than I was, everyone passes me by and the route I take will have been decided upon on the basis that I pass a supermarket or a cafe so I can use the facilities. I am well familiar with the next day or two's aches and pains.
I find if I can persuade someone to walk with me then I can keep to their pace (don't know what that's about!).
Some months ago tho I was contemplating a wheelchair because I seem to be bouncing off the walls in the house, always walking on my toes, leaning and falling forward. I was taking pramipexole slow release, and had been for over 5 years. The specialist added madopar and I am walking better and now able to take those precious walks.
I've been a rambler for many years and am chair of a monthly walking group called the Shamblers and still I am tail end Charlie on most walks. Its partly my age and partly I believe the speed of repetition. Most people will have encountered the simple PD test where the neuro gets you to to touch each finger with your thumb in sequence as many times as possible and PWP's can't keep this up for long but my stamina in other respects is still fine. Last Friday I let others set the pace when I led a walk and it knocked at least quarter of an hour off off the two and a half hours I took when I reccied the walk.
Forced pace walking or tandem cycling (or whatever your preferred activity is I suppose) is increasingly accepted as counteracting the effects of PD. I use nordic poles and when I needed to get up the front from the back stragglers to make sure the group went the right way I was able to race past. I now realise that the tendency to plod, or worse lurch from side to side is not inevitable if I make a conscious effort.
Happy walking everyone
I've just come across this on Neurotalk
Its a book called "If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth?" I Its a book just out by Nancyclist who discovered the benefits of tandem (i.e. forced pace) cycling and I believe she has a cycling buddy to force the pace when uses an exercise bike indoors. There's a lot of research in the US on this.
Mornin, still dead tired lol
I've mentioned it before and Eileen (maybe she's in the usa?) has above,Juju if you fancy a excuse getting out walking with someone in a group there's regular health walks organised all over the country, all different lengths and abilities if that's something of interest too you.
Hi yes I am interested. I will google a local group. Watch this space haha!!
Good stuff, a link where you might find a local group http://www.walkingforhealth.org.uk/