Introduction


#1
Hello . My name is Florrie and I am 56 later this month. I am an active person and swim and keep fit 4 times at least a week.This is the first time I have written on the forum. I am looking for advice and feedback.

My story....During 2009-10 I had a little twitch in my right hand which I had pointed out to my family. I work as a professional and everyone said it was stress, but I love my job and am very capable at it. I went to the GP in September 2010 and said I had a twitch in my right hand and also I thought a slight resting tremor. I asked was it Parkinsons and he said no. Said may be stress but it was no better as the year went on. I went back to my second GP in early 2011... she said the same and gave me an anti depressant as i was up the walls but said she could refer me to a nourologist if I wished as I was very anxious. I said yes as I was now very weepy. This appointment did not take place until April 2011 and again the neurologist said it was not, he thought, Parkinsons. He did lots of practical tests. I was sooooo anxious I asked if there was a test could be done. He said I could have a DAT scan but he said he was 99% sure it was not P. I insisted and so the DAT scan was done in July 2011. The result said there was "the presence of a Parkinsonian syndrome" I was told this over the phone and was devastated.... cried for days. Didn't even know what this meant When I saw the neurologist in September 2011, he said to get on with life and tell noone and that it was so mild it was not noticeable. Other people might not even have been to the doctor with this. I saw him again in September 2012 and he said I was in good form and no need for any medication apart from Propranolol for my anxiety and even had an ECG done which was ok.
To cut a long story short I got a new neurologist whom I saw in April 2013. He did his own practica examinations and I filled him in on my past. he had all my notes from my GP etc.... he stated in his report "I feel it may be very early Parkinsons and as the progression is so slow the outlook is relatively good." He told me to come back in a year and get on with my life. I feel tremors on both my arms when I am nervous and my hands tremor slightly. Should I feel optimistic? I asked about medication but he said no. Would some medication help my tremor? Can anyone advise? I feel fine apart from that,but still feel anxious and at times weepy, but am not on antidepressants. I continue to work as he said to do. I feel devious at work as I have said to noone!
Just looking for some advice from you all!!

Thank you

#2
hmmm. firstly, hello and welcome. the datscan is usually reliable as a sign of parkinsons (or one of the rarer similar diseases - hence 'syndrome'). if its just a little tremor i personally wouldn't rush for meds as they would probably have bigger side-effects than the symptom.
however - it is totally up to you to tell who you want. a lot depends on the people you work with as to whether telling them is good. someone will notice the tremor at sometime - they may make the wrong diagnosis!
as it seems to be nice and slow type and given your age etc i would hope you can work to retirement age without too much trouble though perhaps avoiding stress a bit.
dont panic.
cheers

#3
Hi and welcome,

Turnip has given good advice.

I am 56 too, and the breaker symptoms for me which sent me to the doctor, the neurologist and to take medication early this year were freezing, shoulder pain, loss of balance and everything being so hard to do.

I still have some tremor even on meds (dopamine agonist), particularly when stressed.

Hopefully your progression will continue to be slow, and you can do everything you’d like to for years to come, and that can include work if that is what you want to do.

If you have any more questions, feel free to ask. They are a helpful bunch here!

#4
Hello and welcome to the forum, florrie!

I had my first symptoms of PD when I was 51 and suspected what was the cause. But the first neurologist I consulted reacted just opposite to yours: he not only said I had the disease, but that I would be in a wheelchair within ten years! Doctors can be so wrong! Here I am 16 years later with only very subtle symptoms and still living my usual life (except that I have greatly increased my exercise regime). If your doctors think progression is slow, you will probably be as fortunate as I have been.

At first I declined medication. But as symptoms developed during passing years, I began one medication after another to counteract them. (By the way, a tendency to cry easily was also one of mine.) I have been lucky in having virtually no side effects. When your tremors begin to interfere with your normal life, or when new symptoms emerge, I'd say that's the time to consider meds. But, obviously, the choice is the patient's; and no two patients have the same case of PD.

I wish you good fortune with yours -- so far it sounds mild -- and I think you have reason to be hopeful.

#5
My advice - let's assume symptoms will get worse. establish an exercise routine to delay progression and stick to it. I am certain it works!

Strengthen your core and improve your balance

#6
Hello Florrie
I’m a little older than you (62), dx a year and with symptoms for a good three years before then. I’m sorry you had a runaround getting dx - to show how variable it all is, I was just the opposite: an appointment with the neuro two weeks after I saw a GP, a diagnosis immediately, a prescription straight away (come to think of it, whether to take meds or not wasn’t discussed), and a welcome (?) pack from PUK handed over.

I try not to offer advice - what do I know? But for me a) meds have helped a lot, though by no means completely and not so much with the tremor. b) I’ll make my own decision about who to tell and when - it’s no-one’s business but my own (tho, ironically, the only one I have told is my boss, who guessed). c) my neuro is upbeat: “it’s mild” “you’ve got years” d) I’m defo still working! And I’m mostly optimistic.

Keep ploughing on! (damn, some advice after all)

Semele

#7
Thank you all for your encouagement which is what I really need at present. I am looking too much into the future and need to live in the present. Life is not over yet, as I initailly thought after my Diagnosis.

Will take on board all your advice.