Waiting for a diagnosis


#1
Where do I start?  
 
Hi and thank you for the account approval,
 
I'm not here looking for answers but I am wondering if my story rings a bell with anyone else out there?
 
Approximately 2 years ago I felt a problem with my right shoulder and arm, this was quickly followed by firstly a numbness in the right side of my face and a general feeling that my coordination had gone, I kept bumping into things, I felt clumbsy with poor balance,
 
Two years down the line my shoulder, arm, wrist and hand on my right have deteriorated to a point where I feel sometimes I have no control, I drop things and sometimes I find it impossible to pick up a cup of tea and I can't type on my PC keyboard or use a calculator with my right hand anymore, and generally I feel my whole right side is weaker than my left, I feel my concentration levels have disappeared and I sometimes struggle with short term memory, fatigue is also a huge factor now as I feel as though I could fall to sleep at any time of the day even after a good nights sleep the previous night, I finish work at five and can easily be asleep within half an hour of getting home,
 
To cut a long story short my neurologist felt there was a possibility of PD so he sent me for a DATScan, this has come back as positive but that's all the info I have at the moment, I have since been to see another PD specialist for a second opinion and I am scheduled for further tests and a Spect scan (whatever that is) but after my initial appointment she thinks it could either be PD or something called corticobasil degeneration which frightens the life out of me, she has also requested an urgent neuropsychology assessment which hopefully will throw up some answers too,
 
Apologies for going on a bit but at the moment it is really difficult to understand what is going on, I am hoping for a diagnosis of some sorts ASAP.
 
Best regards and thanks for listening
 
 

#2

Hi finalfurlong and welcome to the forum. 

Your story is very similar to mine and to many others who frequent this forum. I was diagnosed 9 years ago and my first symptoms were similar to yours. The DATScan is roughly the nearest thing that we have to a test for Parkinson's but, as you are finding out, it isn't perfect. Diagnosis can take a while and is often confirmed by an expert neurologist who can tell just by looking at you. Another technique is to start you on Parkinson's medication. If your condition improves in response then you are very likely to have Parkinson's.

Pre diagnosis is a very stressful time and many of us have been there. Don't underestimate the effect that stress, anxiety and possibly depression can have on you. If/when you get the diagnosis confirmed you will be better able to deal with it. Neuropsychology assessment is a good idea and can help you understand what is, or is not, happening to you. 

Parkinson's can be slow progressing, many/most of the symptoms can be controlled by medication so there is cause for real hope. I hope that helps. You will find this forum very helpful. Keep posting and let us know how you get on. 

Elegant Fowl


#3

Hello E.F.

Thank you for your kind words and taking the time to reply,

I am so pleased I came across this forum, even though I have been having problems for over two years it really does seem things are moving along now, and it's always good to listen to other peoples experiences,

I hope you are well and best wishes!

F.F.


#4

Hello, finalfurlong, and welcome to the forum!

Your case sounds uncannily like mine.  I had almost all the symptoms you have.  In my case, as soon as I started taking a dopamine agonist (Mirapex), all my symptoms went away.  It was miraculous.  Then over the years, they re-emerged and required increased dosage and new medications as well.  But now I have had PD at least 17 years, and I am still in the first stage!

Elegant Fowl is right:  PD can be very slow in progress, and its symptoms can usually be managed by medication.  Although not every case is the same, do not be too disheartened if your diagnosis is PD, because it is not the worst disease out there.  It is treatable even if not curable.

Sincere best wishes,

J


#5

Hello J and thank you so much for taking the trouble to reply, that really is incredible, just reading your post has given me so much more hope, once I have seen my neurologist again at the end of the month I will hopefully know a little more but in the meantime it's good to hear that there are meds out there that can alleviate the symptoms,

Many thanks and best wishes! 


#6

Hi all,

My husband is waiting to be diagnosed but his neurologist has said he thinks  PD.

 Was just wanting to know if memory loss is a symptom,  also he sometimes    fall,s over  or trips.

 His MRI scans came back ok. Does this sound familiar to any one


#7

Hi Kaz

Yes that sounds very familiar I'm newly dx with pd 7/6/14  I have cognitive problemes including memory loss inability to take in new info , also suffer with dizzy / light headedness and lazy left leg that means I tend to be unsteady and trip quite often , my MRI was clear as well but I reacted well on seminet so was told it defiantly pd :-(. I'm now on requip xl 4mg a day and that has improved things and I'm going up to 6 mg on Saturday hopefully that will be even better 

I hope this is of some help in knowing his symptoms are not unusual and can be help with the right meds.

anyway welcome to the forum there's plenty of good people on here with a vast experience n always willing to share listen and lighten with humor :-)) 

 live well.   Cc


#8

Thanks Cheshire cat, 

His symptoms started a year ago at first i thought he had a stroke, but that was ruled out. He will be 64 this mo this month, he has stopped work as was a taxi driver. It affects his left hand and leg. Not started on medication yet, it sure taking a long time to get diagnosed, i fed up waiting, and i think he is to. I have read alot on pd and not sure if i,m glad i have or just terrified. Lol. I supose with the right meds, things can only get better. He is taking sertraline at mo as i couldn't cope with his moods swings and anxiety. Think he bit better since starting them. Its all very new at the moment, and thank you for answering, made me feel better.

Do you find drinking beer makes pd worse or that you appear drunk when you only had few beers.?

Will post again once seen consultant. 


#9

Hi again Kaz

The one thing I've found out is the more you learn about Parkinson's the better ,as your more able to  understand what's going on and how to spot problems as thay appear ,  

My left side is affected like your oh but now have a slight tremor in my right hand ,the thing to remember is that Parkinson's is a very individual illness and affects people in different ways. 

Sorry I can't help about drinking beer as I'm t total ...... Have not drunk alcohol since 1978 as it dose not agree with me.

I suppose in a way I was ( lucky ?) with my diagnoses as it only took about three weeks , as I had a meltdown at work and my gp got me an emergency appointment  with a neurologist  and he specialised in pd , took him 15 mins and that was that on meds :-( , But looking back can trace symptoms back 4 years or more, I'm an HGV mechanic so the cognitive probs are a big issue and I've been off work since Easter .

well hope things go well with your oh and your self  keep posting and try to get your oh to join as well as it's good to talk to others in the same situation .

 Live well.  Cc


#10

Hi,

I was struggle for at least 4 years with dizzyness, increasingly unbalanced and the later being stiff and instead of walking shuffling. When i saw the neurologist the left side was so stiff she hardly could bent my wrist and i was unable to turn my head and waist. She says i had undoubtly the classic signs of PD. Starting with Sinemet was a revelation. Its not perfect but now i can get up from the chair almost normal again and turn around in bed. And i dont look like a wooden puppet anymore. I still have to go for a DAT scan but i am wondering if that is usefull after being on sinemet then for 6 months which is meant to make sure the dopamine is transported in the brain.

 

It helped me tremendously sharing and asking here in the forum and was amazed how many people suffered the same symptoms for years

 


#11

 

I  too am waiting for a diagnosis

it's been nearly a year of investigation, but in truth like many others i think i've been ill for quite some time and everything seems to be coming together, when i told my Neuro  my story of how i'd slowed down from being so active too so unable he almost finished my sentence for me. with my tremor and slowness of movement,fatigue and memory problems and observing me, within a few mins he mentioned explicitly 'young onset' but has held back from diagnosis doing everything by the book.

he's sent me for the standard mri and like others it was normal apart from some degeneration in my spine which hasn't been troubling me, next up was nerve conduction tests, also normal apart from i have proximal weakness in my legs. the Neuro movement consultant who conducted the tests suggested if it wasn't 'young onset' then it could be something rarer although he wouldn't elude too what that would be.

I'm onto the 'next level' as my original Neuro put it in a couple of weeks with a 'dat scan' and then see my Neuro again in 3 months for the results, he did suggest the 'dat scan' might show nothing useful, and 'we will cross that bridge' when we come too it.

I do feel what ever it is, is gripping me a little more at a time in subtle ways not just physically and i take a little information from reading everyone else's experience and symptoms that match my own, I think i Would of gone mad if there wasn't places such as this too read about how it effects sufferers from their own experience. and for that Thanks.


#12

One thing is certain, if it is PD and once starting medication for it will be a revelation. Its like defrosting.


#13

 

If it is PD, 

I don't know how i'd react, relief perhaps??, hope?? maybe that i can get back some of what i've lost from medication.

I don't know how i'd choose the right course/direction of medication, my poor little fried brain has taken 20 min's almost too write this reply, i've read so many names of medication bounded about but know nothing further of them,it's quite a lot too take in ,some seem too work for some  sufferers quickly and others not.

 

 


#14

I was relieved, my husband very upset actually. From all the struggling it finally had a name and something could be done about it


#15

My reaction was firstly shock as the nuro dr was very mater of fact and blunt in telling me I had pd,

then my oh took me for coffee and I realise I was relived to find out that I was not going insane as I had feard and I had a medical condition with a name ,   I am still coming to terms with it all and think it wil take a while yet to accept what I have ,the meds are helping and things are better which gives me hope:-)) plus my sense of humer has returned so happy days

   Live well.  Cc


#16

Hi Sea

Within the huge range of emotions available on dx, relief and hope are good ones. We nearly all feel better for having conditions named; and you'll read plenty of stories here about how you indeed recover a life lost. Mine is one of them: due to a number of factors, of which meds is one, I feel at least as competent, and confident, two years on as I did before dx.

Choosing the right course?? That's what we pay doctors for, and why we revere Parkinsons nurses - to choose for us. At least in the first instance. As you get more expert in you, then I think there's a good case to be made for asking the dr who's the expert around here?

keep hoping!

Semele


#17

 

hi Semele

Right from the start I told my Gp i felt like 'id been put in someone elses body' i didn't know my self any more, i have lost my confidence and ability, what ever i have, i'd love too have some it back and above all feel some degree of useful.


#18

When you don't yet have a diagnosis or have a diagnosis but aren't yet on medication, you're in the worst place.  Maintain your hopes if you can, because if it's PD, things WILL get better.  When I first went on medication, it felt like returning to my old self.

Wishing all of you the best outcomes!

J


#19

Hi CC listen to J of GC! Take the drugs!! They make you feel like yourself again!!!

S


#20

Hi all,

Just got home from work to find my husband has fallen again, this time in bedroom.

He said he tripped, this is getting a habit. Lol he went back to see gp friday, but they did not appear concerned about his falls, just said you probably just tripped. I have informed his neurologist so waiting o. An appoi tment, so not holding breatj. Still no meds prescribed. Think this waiting game annoying me more than him.

Hope you all hv good weekend. It's nice chatting to you  all