Wrong Diagnosis


#1

Hi All

I'm new on this forum so let me tell you about my past few months. I received results from a DAT scan which indicated depletion of dopamine resulting in me having parkinsonism. It took me a few weeks to get my head round this and finally excepted the condition. At the beginning of Nov I received a letter to visit the GP. He explained to me that a mistake on my scan had been done as similar patterns of my diagnosis also resulted in several other folk having this. Further investigations were carried out and on conclusion of this my scan is clear. Just back from seeing the Neurologist at the weekend and on further tests with him he says I have a postural tremor. Sounds daft but I had come to terms with my previous diagnosis and now have to tell family and friends who I have told about my previous diagnosis that the scan results were wrong and I'm clear of parkinsonism but have this condition.

Thanks all


#2

Hi Heath

Oh that's really tough. I can fully understand that it means you have to go through all the acceptance bit again. On the other hand, it does sound like good news? So it's a positive message you're giving out.

Best wishes

Semele


#3

Hi Semele

Struggling over the last few days and at this moment.  Just sitting hear typing post and my leg and head having slight tremors.  Also just back from a walk this morn and on occasions i take small stumbles.  My back is really stiff today as well but i guess this is prob a flare up of my ankylosing spondylitis which i was diagnosed with 6 years ago.  My head is really down and for some reason i really feel disappointed with all this recent hassle i have had. 

Just thought i would need to tell people this


#4

That's what these forums are for, telling people. Hopefully with some useful advice but all with shared experiences.


#5

It doesn't matter what label they give your condition, you are still suffering from symptoms familiar to many who have been diagnosed with PD and despite relief that it doesn't appear to be PD it is still an unpleasant, frustrating and debilitating condition. The important questions are what treatment can they give you and how effective is it? Also, what is the prognosis? I hope your neurologist is giving you the relevant answers.

I really sympathise with you because no matter how unwelcome a PD diagnosis, it is a least an explaination  of what is happening to you and a help in understanding it. The emotional effects of diagnosis and coming to terms with it are sadly often overlooked by the medical profession. Best wishes.


#6

I had a normal dat scan result, my pd was diagnosed by a specialist who went by a clinical diagnosis. He told me that a small percentage of dat scans gave a false negative result and that a dat scan was only a guide, in fact there is not one single test to confirm pd which is why he diagnosed me by my physical symptoms. I had to wait a whole year to get my diagnosis and it was a real rollercoaster ride. I sympathise with you and if you disagree with the diagnosis of postural tremor you can always get second opinion especially if you are still having symptoms. pd is very hard to diagnose as it has so many different symptoms so if you have any doubts get second opinion a diagnosis should not be made on the dat scan alone.


#7

I have another appointment with the neurologist at the beginning of Feb.  I think it may because i seen the doctor last year to ask him what postural tremor is and what advice he can give.  He was honest and did not know to much about it and was going to contact the neuro dept.  I guess this appointment will be about that which I'm not to happy with as a 2 hr drive to get there.  Surely the docs could have helped but got to admit i have been disappointed with them since my first diagnosis in August last year.

Anyway reason I'm writing today as yesterday at work and currently as typing this i know today is going to be hard at work. My right leg, head and left hand have tremors.  Was visiting a different office yesterday and they had a chuckle when they seen me getting up and dropping folders and tripping up.  They don't know my condition so i guess that's just the way it goes.  Yesterday was the worst have felt.  just sighed, got up and disappeared. 

As i said i feel selfish writing on this forum as have postural tremor and not PD.  Just feel no where to help me.

Thanks all for the previous replies

 


#8

You are not being selfish having a tremor can be very embarrassing whatever the cause if it helps you to come on the site then carry on, No one will think badly of you for just needing support PD or not everyone with similar problem welcome as far as I am concerned.


#9

Cheers for that.  Took today off work as just could not face going in as as not to comfortable at work this last few days.  Just found out my visit with the neurologist is to talk about this postural tremor which my locum could not tell me about. 


#10

I hope the talk with the neuro is really helpful, good luck!


#11

this forum has always been inclusive not exclusive, especially for  closely related but rarer conditions.

i hope it stays that way.

welcome.


#12

ps postural tremor appears to be a symptom not a diagnosis. hope you get a benign diagnosis. 


#13

Well today at work was eventful.  Going up stairs and tripping on the top one.  Then when leaving the site and going to my car a person in his car stopped to let me walk past to get to my car and had a wee stagger and a nice wee trip.  Looked round at the guy and he  gave me the hand at his mouth indicating have i been on the drink.  Got to my car and thought what is going on with me.  Due to go to a running club and start training for a 10K but now no way going tonight as to embarrassed.


#14

happens too us all.

very annoying.

if i were to take a bet i would bet on your original datascan being correct. a levadopa test would be interesting to see if you respond


#15

i am sure someone will correct me if i am wrong but   along with a resting tremor you can have a postural tremor with pd confused


#16

YES

in fact, come to think of it  I DON'T HAVE RESTING TREMOR ONLY POSTURAL! DUH!!

 


#17

Yes I agree I think having a Levodopa trial would be helpful and if you improve while on it then a diagnosis of pd would be the sensible one. There are many different symptoms that go with pd and I am a bit surprised that you haven`t already been put on Levodopa to see if it helps you. You seem to be exhibiting many signs of pd and you need a firm diagnosis which is half the battle, not knowing for sure can be a nightmare. I hope you get the help you need and that you get the treatment that you obviously need. good luck. Some people who have pd don`t even have any sort of tremor so that symptom is not the definitive one.


#18

Hi all

 

I really really appreciate the messages you have giving me the last few days and will take all this on board when i go to the hospital.  i also have a diary which i have of experiences over the last few weeks.  It has really been extremely hard over the last few months with "Yes you have parkinsonism, sorry you don't"!

Thanks all again for letting me say my thoughts on the brilliant forum 


#19

Hi Heath, Good idea to keep a diary, It can be hard to think on the spot about experiences you have had, It is terrible having to wait for a diagnosis for so long, Good luck for you`re next appointment I really hope you get a final diagnosis, Keep positive and keep in touch. You are never alone on this forum.


#20

Me too. I put my hands down by my side to get a break from my 'nervous' postural tremor.