How were people diagnosed?


#1

Hi everyone, I hope you dont mind me asking but what tests etc were done for you to get a diagnosis? Because I think I read there isnt a definitive test, is that right? Im waiting to see a neurologist and I want to know what to expect! Thank you


#2

Hi Suzynola

Yes, there isn't a single definitive test for PD. For me, it was a quick process: a short history (can’t walk straight, can’t use my right hand much, tremors); and a few simple tests: writing, drawing a spiral, holding out my arms, don’t remember any more. And on that basis, a dx.

But if you read other people’s accounts, you’ll see those who’ve spent six months or more in a battery of tests and maybe still haven’t got a definitive dx. I saw your other post and noted your age, and if I was a betting cat I’d think the medics would probably want to rule out other conditions before thinking of Parkinsons.

I can see it’s a worrying time, and I do hope things work out for you.

Best wishes

Semele


#3

Hi Semele, thanks for your reply. What other things are more likely that would cause my symptoms? I know about essential tremor but i dont think it would cause all the other things? I know i am very young for parkinsons but ive always been the odd one out hehe. I just want to know whats wrong so i can hopefully get control of my body again!


#4

hi suzy

the first time i went too the neuro i didn't know what too expect either, i had waited nearly 6 months too get too that point,

He started off asking questions,history or note taking i think they call it,medical and work history,my family,symptoms ,about how long i have had a tremor which he could clearly see, he never took his eyes off it or me, how i sit,look, expression,how much i blink, do i have any difficulty turning in bed, hand writing, speech, all too build up a picture.

then he invited me too walk up and down in a larger room, looking at my gait(stride), did my arms swing?, how i turn around, am i symmetrical, then my reflexes arms,legs, fine finger movement ect.

and then another chat in which he was quite blunt and too the point saying strongly the possibility of 'young onset', he asked if i'd heard of it, which i had, a very close friend had observed me and told me in no uncertain terms what he fought it was wrong with me as he had a family member who had the same.

he looked at all the blood test's my gp had done, and sent me straight away too have one for 'wilsons disease', i  must admit feared the word 'wilsons' more than i feared the word 'parkinsons' but that came back clear, he also as seems too be standard sent me for a M.R.I and nerve conduction tests.

9/10 months on and i go for a 'dat scan' in 2 weeks and then wait 3 months for the results, it's all a long process and i'm not certain i'll have a 'diagnosis' even in 3 months time, some are given medication too see if they improve and then a 'dat scan'.

 


#5

Hi Suzy

My dx was similar to semeles , I had a cognitive melt down at work after several months of exhaustion and deep stress , my gp got me a nuro appointment as an emergency case thinking I had had a stroke or tumer saw the nuro on a Saturday he just happened to be a Parkinson's specialist who asked about my history walked me up n down the corridor , tried my reflexes in a variaty of ways bent n twisted armed n legs , then said we were going to become really good friends as I had Parkinson's ,he gave me a prescription for seminet another appointment  and one for an MRI scan .

when I saw him a month later he asked how the meds worked was happy with my progress MRI was clear changed me onto requip xl  , I'm now on 6 mg a day n feel loads better and go back to work part time on Monday :-)) 

So I guess I was lucky in some ways as I went from collapse to dx n meds and back to sort of normal in about two months , don't know how long before I will have to give up work but will keep going as long as poss .

Ive got my first pd nurse appointment next month and think Yeovil district hospital have been terrific  and can't praise them enough .

  Live well.  Cc


#6

Thank you both for your replies, I dont know if you saw my other post in introductions, im wondering if people with this think my symptoms seem like parkinsons. Im not scared of any tests or anything, its the not knowing whats wrong that kills me! Thanks for explaining the processes you both went through, i hope the neurologist i end up seeing is that thorough, docs never seem to take me seriously =(


#7

 

Hi Suzy

I Have read your other post.

You've been through the wars, but don't be disheartened,My Neuro assured me i was in the right place And there was lots too be done, before i went in a little nurse was very good she said if i need extra time don't be afraid too ask for it it's not a problem.

It would prob help you too write thing's down as you go along before your appointment. My memory is just as bad.smile


#8

It took around 5 minutes.

Consultant  said,  walk up and down, do this with your fingers.................you have P. That was  it.

I knew it was either P or MS, having spoken to our GP in confidence, (having Googled and being a Biology teacher), and he also  speaking to me in confidence, I knew it was one or the other.

 We had both  travelled to the appointment from work in separate cars.  It wasn't a great afternoon back at work for either of us.

It would have been kinder if the consultant had planted the seeds of his diagnosis  to my OH... it may be P, but come back in 3 months and I will reassess you.

OH had no idea of what it might be and  the quick and unsympathetic diagnosis, no info from PUK provided,was unjustly harsh and unforgiveable.


#9

As one of the posts above says, to the experienced neuro's  eye it can be obvious, i.e. the clinical signs are unmistakable to the neuro .  Hence the five minute consultation and no information which sees standard procedure unfortunately.  If you do need info.on PD, don't forget this site has a wealth of publications . on every possible aspect including employment as does the helpline above. .  It does seem to me that the younger you are, the longer the diagnosis can take, perhaps because its the least likely..  They usually give younger people (this anything up to 50 hears of age which may seem strange to you at your age  but qualifies as "young onset" PD)  a DAT scan to rule out other possibilities. 

If the doctors do not seem to take you seriously, you might ask to see your medical notes at the GP's notes to see if what has been written over the years.

I would have liked to put the above in a more logical order but it won't let me copy and paste.

Best wishes,


#10

Yeah I think I probably should start writing it all down! Sorry your diagnosis experience was harsh for you Benji, thanks for sharing your experience. Thanks Eileen, yeah ive never had much luck with diagnoses, I think cos im young some docs think im faking but we'll see!


#11

You'll get knockers Suzy it seems par for the course,

I doubt i'm the only one in saying this but before diagnosis and perhaps even after it??, it does seem like you have too justify yourself quite a bit, the first time i went too the doctors i felt like i had totally wasted my time, And my love of fishing i went on a day when i felt able too for just a couple of hours, too see if i could, i struggled, a friend said ''oh your better now, what was it??''. 

 


#12

Ive always been quite lucky with people generally and friends, they all seem to accept it and realise ill do stuff when i feel i can manage it and sometimes ill be stuck at home, i do push myself a bit too much sometimes but you have to! My gp is taking me seriously so i hope the neuro will! When I was paralysed one time a neuro came and jabbed me in the toe with a pin while i was sleeping cos he thought i was faking and expected me to flinch, i didnt move so that showed him!


#13

My boss is the best one.  When I told him I had Parkinson's he said. Well I get tired and my hands shake sometimes but you don't see me making a big fuss about it !   And that's from someone who takes to bed for a week with a cold. Lol


#14

What a knob! I always try and tell myself that nobody can understand unless they have experienced it themselves but they can at least try! Sorry you have to work for someone like that. I only started my job just over a month ago but they have been great, i work in a hospital and one day my whole body started shaking so they sent me to a&e and my boss came and sat with me for a while which was sweet


#15

Also, when Im writing things down for the doctor, should I just write down the neurological symptoms or should i also write what i eat, when I sleep etc?


#16

I haven't read  all the previous responses so I hope I am not repeating myself.  I noticed my hand quivering after a good workout.  It was only every so often and didn't concern me but my family doctor sent me to a very experienced neurologist.  He diagnosed me by having me put my limp hand on my lap and count backwards from 100 by 7's.  Part way through, my hand started bouncing.  "Early stage parkinson's," he said quite matter factorily.  I had heard of parkinson's but he might as well have told me I had a bad cold for all the impact his words had on me.  It was not until I googled it that I discovered the seriousness  of the condition.  But I also read that if one has to have a degenerative brain disease, parkinson's is the best one to have.  When I was prescribed amantadine and mirapex, the tremor disappeared so I was not particularly concerned.  That was at least 3-4 years ago and not much has changed overall and I continue to be quite optimistic.  Good luck.


#17

You want to put as much info as you can that way he will have the whole picture ,

I broke n dislocated my ankle at work in the snow a few years ago n my boss said that I must have brittle bones lol.  Very sympathetic 


#18

My diagnosis took about half a hour during my first visit to the Neurologist

I went to my gp around 4 or 5 years ago with a tremor in my left hand my gp was not concerned and put it down to anaemia, then a few years later i started to feel stiff and achy when getting up from a chair and out of bed in a morning another gp visit , this time it was put down to my thyroid problem , then about 6 months later my tremor started to become more noticeable and my left shoulder was very painful and i also had a feeling like i was shaking on the inside so off i went to gp again who did a few tests  she said if they came back clear she suspected it could be something neurological , they came back cleaar so she referred me to a neurologist  , i asked her what she meant by neurological she said she would have thought essential tremor but was not convinced as i had a resting tremor, so i went home and searced google and google said essential tremor or parkinsons , so when i went to see neuro parkinsons was in the back of my mind , neuro did his examination then asked me what my gp had said i said that she didnt think it was essential tremor he said no she is right and he was more than positive i had parkinsons , but ordered a mri to rule out other conditions and a blood test to rule out wilsons disease both came back clear but in the interim between my first appointment and my next appointment my mother was diagnosed with pd as well so at my next neuro appointment the diagnosis of familial parkinsons was rubber stamped as it were


#19

Thank you wpg, im surprised how quickly and easily some people are diagnosed! Your boss sounds like a nightmare CC, poor you! Thanks for sharing Shelly, yeah the A&E doc I saw a few weeks ago when things were really bad said he thought essential tremor but he didnt really seem to care at all and I felt he just wanted to get rid of me! I know essential tremor is more likely, even though Im quite young for that too, but I dont think I should have all the other symptoms with that. One doc thought I had a thyroid problem too cos Ive been losing a fair bit of weight as well but those blood tests came back fine. I have that feeling of shaking on the inside too, and sometimes I feel like my hands are really shaking a lot but when I look at them they dont look that bad, its a weird feeling!


#20

Further to post 8 by me

Can't fault our GP who referred OH immediately; as he was only 47 it was probably a hunch by him, but one that was correct.He did not dismiss P because of their age.Considering GP's don't see many cases of P, we were fortunate BUT OH hardly ever saw our GP for anything, so, when he did, this time, maybe our GP took it seriously.

It was the way P was diagnosed and the unfeeling attitude of the consultant who made the  diagnosis, which was unacceptable.