Confused after seeing a consultant


#1

Hi I'm new on her & would appreciate some help from the people who have been diagnosed & live with Parkinson & the knowledge they have off this disease 

after a six week wait for my referral i finally got to see a consultant at our local hospital yesterday Friday 6th December whilst i was waiting to see him a nurse went into the room holding a blue Parkinson pack i was called in and i went through my symptoms ie tremor in both my hands & arms & slightly in my left leg . my right leg goes numb when i walk my legs and hands are painful kneeling down is bad & getting back up is worse & my tongue is very dry handling keys is a problem and my handwriting is awful although it wasn't very good in the first place. And to be fear they really did a full M.O.T on me i was pushed puled walked they took my blood pressure did blood tests & an E.C.G test then the nurse asked the consultant if they needed this Parkinson pack & he replied NO. so straight away i thought wow that could be a good sign and felt quite relieved after a few more test i sat down & the consultant told me that the symptoms i have are typical of Parkinson disease but he would not make that diagnoses at this time & said he would keep seeing me & was sending me for an MRI scan & gave me a proscription for Propranolol tablets to help with the tremors. So now i don't know what to think on one hand i thought it was looking like good news now i am not so sure and even more confused there was so much to take in maybe i should have taken someone with me   

so i guess what i am trying to ask is is this a normal practise and can it take this sort of time to get a diagnosis  i would really appreciate your thoughts on this many thanks   


#2

hi cparro

I'm sorry to hear about your experiences. I suspect this is common; I was diagnosed in April 2012 (age 33) and it took 3 months from being told I MIGHT have Parkinson's to confirming diagnosis. It was the worst three months of my life. I was in no mans land; I could neither come to terms with Parkinson's because I had yet to be diagnosed (that "might" included a might NOT) or get on with my life with a Parkinson's sword dangling above me. During that three months I was offered no professional emotion support. I was left to the internet and to my despair. This process should be better, easier, take less time. I understand there is no diagnostic test for Parkinson's so it is a difficult diagnosis (I too had blood and urine tests and an MRI scan). BUT the way it is done at the moment, IT IS HELL! IT IS A HORRIBLE EXPERIENCE! IT IS EXQUISITE TORTURE TO WAIT SO LONG TO KNOW IF YOU MIGHT OR MIGHT NOT HAVE AN INCURABLE, PROGRESSIVE DISEASE!

PARKINSON'S UK YOU MUST CAMPAIGN FOR A LESS PAINFUL WAY TO BE DIAGNOSED!

Sorry, but it upsets me that others are going through the same hell as I did. Don't get me wrong, I don't blame the Doctors it is the NICE guidelines that are at fault. There must be some sort of professional help offered (e.g. counselling) during the wait for a diagnosis. To be unaware of the effect of telling someone they "might" have Parkinson's and offer no emotional help is deeply confusing. Imagine if you were suddenly handed a ticking time bomb and you didn't know when it would be defused (you don't have Parkinson's) or how powerful the explosion will be (you have Parkinson's). 

It goes to show the burden of such a horrible time - I was relieved I was diagnosed with Parkinson's! How crazy is that?! But it was better than half knowing I had Parkinson's.

How you are diagnosed is incredibly important in setting you up for the crucial first year of knowing you have Parkinson's  - it can make that year even more difficult healing the scars of the torturous diagnosis in addition to coming to terms with the disease.

I can empathise cparro. I know how confusing it can be. I hope you are ok and a declaration comes quickly (I hope you don't have Parkinson's)

take care

dr jonny

 

http://dialoguewithdisability.blogspot.co.uk/2013/01/the-mental-challenge-of-parkinsons.html


#3

Hello cparro

I'm sorry you're having a bad experience; the waiting is the worst I'm sure. If you read other posts on this site, eg at http://www.parkinsons.org.uk/comment/88471#comment-88471 and following, you'll see that it's actually quite tricky to diagnose PD - and indeed about the only real definition of PD is that you have it if you react positively when taking drugs that are supposed to help PD, which is rather circular. Quite a few people report a dx taking some time.

At least your and dr jonny's neuros were thorough. Mine, on the other hand, did a few basic tests (hands outstretched, the spiral drawing, handwriting and one or two others) and confidently dxd PD. Not sure whether she was hasty or super-efficient, or I was a very easy case.

In the meantime, keep strong. If it is PD it's not the end of the world, as other posters will testify. For many of us, the symptoms are greatly relieved with meds and progress can be slow.

best wishes

Semele


#4

Hi dr Johnny & Semele many thanks to both of you for taking the time to respond to my post and thanks for your kind words and for sharing your experiences with me it would have been nice to have drawn a line under this and had a definite diagnosis so I can move on with my life & make positive steps to dealing with it I'm not frightened of being diagnosed with Parkinson it's the not knowing for sure 

so I guess I will have  to be patient but there is one thing for sure if this is Parkinson I'm ready to put up a fight and give it a run for its money your kind words have meant a lot to me and I feel that with support from people like you & this forum we can all gain strength

many thank take care


#5

Hi cparro

welcome to the forum

yes it can take a long time to get a diagnosis

i had been going back and forth to my gp with various things over the last couple of years  the first being a tremor in my left hand which over the period of a year or so was put  down to various things , anaemia, and then my thyroid problem , then my tremor started to get gradually worse and i noticed i was stiff and achy getting up from a chair  and then i developed a painful shoulder my gp finally referred me to a neurologist in August , who told me that he was more than confident i had Parkinsons but needed to do a Mri scan and a blood test to rule  out other causes as others have said it can be very difficult to diagnose pd and my neuro said to me we do this by ruling out other conditions and seeing if there  is a positive result to Parkinson medication

Stay positive , the way i look at it pd is not the best hand life could have dealt me but it  is by no means the worse , if it is PD learn as much as you can about it knowledge is power as the saying goes  and the forum is a great place to find answers to your questions and also to find support

 

Good luck


#6

Thank you Shelly65

for your welcome to this forum & for taking the time to share your experiences with me I had done a lot of research on line up to my referral and often looked at Parkinson Uk but not having been diagnosed I didn't register or want to waist people's time 

it is so true what you say knowledge is power and although some of the things you read does put the fear of god up you at least you get to understand how things progress. I am so pleased I have registered now with Parkinson Uk thanks to you and the other people that have taken the time to write to me I feel more relaxed about the diagnoses pros eager

many thanks take care 


#7

Welcome, cparro, and good luck!

I went the Google –> GP -> MRI -> Neuro route, and got a confirmed diagnosis from the neuro. Two thoughts:

1. He already had the MRI results to look at.

2. Mine was a classic or uncomplicated case, in his eyes.

3. That’s his style of doing things.

Well, that’s 3 thoughts. By the time I saw him I was in need of something to treat the symptoms. I had accepted Google’s diagnosis well before following up with GP, MRI, etc.

Others above have given good advice, so I won't repeat it. Don’t give up on your life. Start living it!


#8

Hi Cparro.

I have to disagree with Dr J (not something to be done lightly!) but I hope you do have PD because, given your symptoms you have something wrong and pd, in most cases, is on the benign side of possibilities. I dont want to scare you rather let you know pd is liveable with for most people for many years. Lets hope for clear mri (i had one, its a bit like a one person Kraftwerk concert and it was clear). The vast majority are clear, it just to rule out some possibilities. 

best wishes

T


#9

I do agree waiting for the results of formal test is excruciating but necessary .I have a clinical background and 3 colleagues have had either Motor neuron disease and MSA and are no longer here so to me PD was the more palatable I would really prefer not to have it ,but is to me the lesser of what in my mind could have been!   


#10

Hi cparrow and a belated welcome.

I do hope you get a diagnosis soon, and I wanted to applaud you on your determination to give it a good run for its money if it is PD.

That is my sentiment too, I am a full time carer to my young adult daughter who has a severe learning disability so she keeps me busy which alongside my allotment and my dear dogs keeps me motivated and focussed. Though I COULD do without nights like tonight where Gemma has a sickness bug so /i am staying awake (its now 03:54) so I can tend to her as and when.

I have started a blog too which is therapeutic and can help others, http://tjkernow.blogspot.co.uk 

 

Stay positive my friend and you are among friends on this forum.

 

Tony, in Cornwall


#11

Hi Tony

there are quite a lot of us with special children

Here's mine

 http://tinyurl.com/PUKOWEN5556

 


#12

Hi Tony thank you for your welcome

i am so pleased i registered with Parkinson UK the people on her have been fantastic shearing their experiences & giving good sound support 

But it is i that should applaud you for showing true grit & fight i can only imagine how busy your life is looking after your daughter & all the other things you have going on. But it is obvious it comes from the heart & with lots of Love Yet you still find the time to help other people like me & it obviously rewards you with the strength to keep mentally & physically focused 

many thanks for sharing your experience with me it is post like these i will draw my strength from may i take this opportunity to wish you & your daughter a very merry Christmas             

Take care 


#13

Hi Tony

 My daughter has now left home and started to make her own life ,she is nearly 23 , she was a premature baby and was only 3lbs when she was born , unfortunately she suffered a stroke shortly after birth which left her with a relatively mild form of Cerebal Palsy  but she has gone one to be independent and has her own place now .


#14

i sometimes wonder if the stress of having a child with a disability could have contributed to my pd. I feel there is a higher incidence than amongst the general population. not that it matters either way.


#15

Interesting. I have a disabled son (cerebral palsy). Very stressful. For the next 18 years I fought a legal battle with the NHS over liability for his condition. Even more stressful.

Bob


#16

Hi Bob 

i agree it is interesting four people have posted on my page that they have disabled children. Unlike myself I never had the pleasure of having children but I have been self employed for a lot of years a soul trader in property maintenance business & live on my own I've had it all to do myself worked 12 hour days 7 days a week looked after my home washed cleaned & cooked done paper work into late hours and kept accounts 

and I have loved every minute off it that's how my life is I've never taken a step back and let people help me but I've always been the first to help others and I've wanted to. So I never felt a stressful person or a worrier if there's a problem I'll deal with it 

so maybe one day they may find something in people's life style to link it with Parkinson's and other disease it does make you wonder 

I agree with Shelly 65 it not the best hand I could have been dealt but I will stay optimistic that the next turn of the cards the deck will one day be stacked in our favour

take care


#17

It's horrible being left in limbo, in no man's land. I was lucky in a way, my diagnosis was rather blunt and to the point. My GP saw me two weeks after my appointment at the hospital and assumed the neurologist had already told me (which he hadn't). My GP mentioned almost casually, "Well, of course you have Parkinson's....."  he was mortified when he found out I didn't know!

I do agree that the lack of emotional support and help preparing for an uncertain future following diagnosis is appalling, a total disgrace.


#18

HERE HERE! I had to wait over a year for my diagnosis and it nearly drove me insane, I began to think that the doctors thought I was a head case or a hypochondriac. Its quite sad to think that to be told I had pd an incurable disabling condition was a relief. Things really need to change and soon to prevent other people going through the hell and misery i went through while waiting for my diagnosis.


#19

Hi Candy thank you for your post 

i saw the specialist on December the 6th like i said in my first post i haven't been diagnosed with Parkinson yet i Have my MRI scan this Thursday and i have to see the specialist again on 5th March and at present i am taking propranolol tablets for my tremors and they have really helped .Mentaly i am as prepared for the decision  as i can be its just the waiting i can except the wait if it means they get the right diagnoses 


#20

Good luck on Thursday I hope the MRI scan goes well. The MRI scan will not show Parkinsons but it is useful in ruling out other neurological conditions I had an MRI scan and was told that if the MRI was normal then Parkinsons was the probable diagnosis, My MRI was normal and a few months later I was diagnosed. As you say waiting is just awful you keep thinking about it all the time and it is true that it is better to wait to get the right diagnosis, It would be great if they could come up with a simple blood test and then you can find out in a matter of days. I remember the feeling when I was told, It was a real mixture of emotions, Relief that all the tests were over and I didnt have to go through any more, Then a feeling of panic that I actually had PD, Then relief again that all the anxiety of waiting was over. No one can prepare you for hearing the news, You think you know how you`ll feel but it is so different in reality. I hope you are not left in limbo for too much longer its not a nice place to be.