Hi Colin,
Umm. So still not that much clearer then, Why are you going for this nerve test? Has there been any hint at all as to what is going on?
There is a syndrome called Raynards Syndrome I believe its to do with the nerves, Has this ever been mentioned to you.
Hope you get some answers soon.
Take Care
Candy.xxxxx
Hi Candy
i don't know why I'm having these tests done he seems to think it may throw some light on my leg problem and the shooting pains in my fingers
I had a nerve conduction test done on my hands two years ago at the time my right hand used to go to sleep and I had tingling in my thumb and fingers and it was graded above 4 so I had a small operation on my carpal tunnel done and my left hand was only grade two but I wasn't having problems with that one
all he has ever said is that it is essential tremors and he keeps saying the same thing last time I saw him I asked if he was treating me for Parkinsons and he replied at this moment in time I'm treating you for essential tremors and if things Chang the next time I see you he would tell me and there has been no discussion a bout anything else
my thinking is that he doesn't relate the aches and pains with the tremors I don't know Candy I've got so much going on in my head right now Seem to be tackling lots of problems at the same time and not making any headway at all
Take Care
Colin xxxx
Hi Colin,
I feel so bad for you, You dont seem to be getting any of the answers you need.
I really hope that it all comes together for you and you get a proper diagnosis soon.
Keep in touch and let me know how you are doing.
Lots of love
Candyxx
Hi Candy
Thank you for your kind thoughts I'm sure it will as you say come together
Take Care
Colin xxxxx
When i signed in today it told me i had one notification but when i looked there was nothing there may just be a mistake but if you have posted on my forum can i apologise for not returning any comment it just isn't there
regards Colin
Hi Colin,
Thats a bit of a mystery. Anyway how are you are you any closer to getting a diagnosis.?
Take care Candyxxxx
Hi Candy
i am good thanks for asking hope your ok like the picture its nice to get a face to the person your talking to
who said that people with Parkinson don't smile very nice. This is the second time its showed i have a notification and there has been nothing there must be me i am loosing it not really
No i am still no further to a definite diagnoses he has got the tremors more manageable but it seems like neither the consultant or my doctor want to know about the pains i have if i say any thing to the doctor about the consultant just seems to fall on deaf ears but i have since found out they are good friends and my appointments are now every six months so I'm just making the best of what I've got at the minute don't really know where to go from hear
good to hear from you take care Colin xxx
Hi Colin,
If I were you I would ask to see a different consultant, We all have the right to request that if you are not happy.
I just cant believe that after all this time you still dont have a definite diagnosis. I think you have been patient enough, Maybe its time to be heard!
Take Care Candyxxxx
Hi Candy
i agree thing is Candy I'm not one for making a fuss and yes your right I do have the right to change consultants thing is I think I would have to travel to another town to get that and that would be a 70 mile round trip. This guy still keeps to his first diagnoses of essential tremors and has a strange way of cutting you out when you try to discuss any pains you may have. In fact he wasn't happy on my last visit because it got moved forward and it showed in the loose hand shake I got and the constant reminders that he would keep seeing me on a 6 months basis just feel that no one is listening all my working life I have never been a sick person and in business I always made the decisions so all of this is new to me and like living in a different world
take care Colin xxxx
Hi all
i can't believe it's been five months since I last posted on hear i didn't see the point of going on about my problems when quite frankly I wasn't really doing any thing to help myself . Although I did take on board what Candy had said in her last post about it being time to be heard
and with that advice I decided that I would up date my status when I had definitely got something more to report. Today the 25th February I had my appointment with my consultant and received the news I didn't want to hear but have been ready for for over a year now and it came as no big shock to the system to be told today that I have Parkinson's and he has changed my medication
I've taken the afternoon to reflect on the situation phoned the DVLA has I was told to and now I'll have to wait to see what happens next still got to get round ESA assessment on the 7th March yet and not really sure where I go from hear and although it's not what I wanted to hear at least now I have a better understanding about what is happening to me and relieves all the stress of having to keep pushing to get something done it's not really the way i operate but on this occasion it was a case of needs must
i would just like to thank everybody for listening and there time
Take Care Colin
Thanks Gus
i always thought the diagnosis would turn out like this so I've had a year to prepare for it & in a lot of ways it has taken the shock out of it and I know that with the support from people like you & others that have this horrible disease on this site I feel confident I can give and receive a lot of help & support
Take Care Colin
Hello Colin sorry to hear you have been diagnosed with pd . In some ways it must be a relief to know what it is . You have been waiting so long . I know how you must have felt as it took a long time for me too - probably about three years . Hope you get on the right meds for you soon and you start feeling a lot better . Remember there is always someone on here to talk to which is a huge help . Best wishes
Hi Maddison
I Know that it is a strange statement to make that your relieved to have been diagnosed with pd.and most people would think you was barking mad but it can be a long journey before getting a diagnoses & all the frustration and the feeling of no one is listening to you that go with it all in the end i think it does come as a relief & yet when i look back at things now i think my diagnoses has been quite fast compared to most people on hear that have waited thee years plus
i have been started on 1mg Azilect rasagiline & hopefully i will get on with them without to many side effects it would be nice to get some movement in my body going again & not so much stiffness
Take Care Colin
