Newly Diagnosed


#1
I saw a neurologist first about two months ago after being diagnosed with essential tremor but I developed another symptom to do with walking ie slowing down as if weights were attached to my legs. I somehow suspected PD and when I asked the Doctor he said yes and he wanted me to have an MRI and DAT scan. I felt as if I was being tortured and finally saw the consultant again two weeks ago. He confirmed the diagnosis and said 'You must be positive' but I find it devastating. I've always been healthy and fit, even though middle aged. All these negative feelings and I hate my hand tremor. I've been put on Mirapexin and have to work up the dose. Can anyone tell me about side effects and how they find it. I know I'm lucky in one way because my Consultant is great and not patronising. I have a thousand questions and the most important one is 'why me?' I truly believe it's been caused by some horrible traumas I've had but the Doc. said no evidence. Whatever. Sorry to moan but the forum is wonderful and knowing there's lots of us out there, makes me feel less alone.

#2
I was diagnosed 10 days a go at 50 and like yourself its frustrating and hard to take in but you must be positive. You are certainly not alone and like yourself I was a very active person and only left the Navy in February. Its hard but I'm sure others will tell you here that help is out there and the best way is to help each other.

Take care and never feel afraid.

#3
Mary

I was Dx in March this year and was put on Mirapexin, Immediately my hand writing was legible again and the pain in my leg disappeared overnight. Unfortunately i suffered with nausea very badly, for a good few months and still suffer with dizziness.

It is easy to say 'be positive' isn't it. Not so easy to do, but on a positive note, I have a good job (just got promoted, despite the PD) I still drive,and consider myself fit and healthy, but with a few aches and pains.I still look after my grandson and have the energy to play football with him.

Life is not over, it is just different.

Thinking of you

Caroline

#4
Thanks so much Caroline. You cheered me up.

#5
Welcome to the forum Maryowen and Fordy. I was Dx about 6 years ago at age 39. I asked all those questions too, I cried and mourned for the future I thought I was losing, I felt lost, I asked 'why me'. It was a confusing and horrible time.

My GP and Neuro were very sure I had PD from the first consultation but it took about 2 years to confirm the diagnosis.

This is club nobody wants to join but nevertheless there are some fine and inspirational people here.

Elegant Fowl

#6
Hi Maryowan and Fordy,

Welcome to the both of you to the forum. You'll find this forum very useful. If you have questions ask away. There are many people on Mirapexin here who I am sure will contribute to this thread.

Take a look at the thread Age and Date of Diagnosis (and contribute if you so wish). We're a diverse bunch! :sunglasses:

Best wishes,
rico

#7
I had my diagnosis confirmed on 25th august following a DAT scan, I turned 50 in june. I too mourned for my future and cried lots and lots of tears. Now a few weeks on I have come to accept what I have and am determined to enjoy life to the full. I am honest with people and try when I can to 'mock' my tremor and have a giggle about it. I know I am in the early stages and am sure there will be tough times ahead but I will face these burdens when they arise and keep smiling.

#8
I was diagnosed two years ago aged 37. I went through all the stages over the years around and prior to that, shock, fear, devastation, disbelief. etc. I've been to some very dark places since joining P club as I'm sure we all have. However - currently doing better than I ever thought possible - because of self help and medication you can get marvellous results , well at least I have so far, 6 years in. Mirapexin just made me feel a bit shaky sometimes but that wore off and as it kicked in I was amazed to find myself walking much better and being able to write again ! Nothing is good about this illness but at least we mostly can access good healthcare and meds in this country, some places in the world you'd be in dire straits. We're all at different places in this journey, things change for better as well as worse, focus on today cos the future is unknown. Have faith in yourself and hassle your doctor, that's my motto!

#9
Hello Maryowen & Fordy I wish you a warm welcome.
I have come across a whole range of reactions to a dx of pd - relief, shock, anger, denial, fear All are equally valid and there is no need to feel ashamed of or aplologise for them. I have yet to come across someone who is delighted with the dx
Mary = I have no personal experience of Mirapexin, but as you have already seen many other forum members do & are willing to answer your queries based on their own experience. You will find I think much support for your "trauma theory" on here, but as it is not scientifically proven, I doubt you will find a Doctor to back you up.
Foxy, I do agree with you - one of the best ways of helping yourself is to help others. You just never know when a Q you ask or a remark you make may cause another to breathe a sigh of relief
-pd is not the end of the world, Caroline puts it well. -life is not over, just different You may need to make a few adjustments, but it can still be productive, beneficial, rewarding & enjoyable.
Best wishes to both of you

#10
hya mary owen and fordy ,welcome to the forum:smile:im ali i been dx for 11 years in november,im 42 ,ithere is good surport and good friends on the forum ,i hope to see u around x:smile:

#11
hi i was dx at 35 still carnt come to terms with it put on ropinanol after trials with other meds ropinanol loads of proplems lost lot of money addicted to loads sex stuff wasnt good time now there worried what to p[ut me on at min they just keep uping my dose of sinnemet not helpin much injections of apoago pens help but inly short time span well thats just me sorry if negative but there you go

#12
Welcome to the forum, please ask any questions you have even though you might feel they are silly. We have all been where you are now, so we cam help you get through this.

#13
I want to thank all you lovely people for replying to my 'feelings' message, and to say how much I appreciate you!
It feel so comforting that many if not most feel similarly. It certainly tests one but as they say, 'shit happens' :rolling_eyes:

#14
Hi i was given the news that i have parkinsons in may 2011 the consultant was very matter of fact. i fell apart in the car park at 56 like you was quite healthy i felt life had dealt me a blow. but after telling my family and work colleges and reading all i could, things began to get easer not better but easer. yep people look when i shake so what. i work in a day nursery and the children call it my silly arm and hold it till the shaking eases.The biggest regret i have is not having the energy i had to play with my wonderful gran children, but yet again they keep me in check and tell me its ok just try nan. My meds seem to be helping im on Ralnea xl 12 mg (Ropinirole) and have no side affects.just fell sick sometimes if not taken with food, but have motilium anti sickness pill that helps.And my G P is great iv pestered him no end but working together i feel im in good hands. I think my husband finds it hard seeing me shake and the way i walk sometimes, but we laugh and talk and just walk slower. (you see so much more when you do) x

#15
Welcome to the forum Ravetta,

I hope you will find this place as helpful as I have done. There are lots of straight talking, warm hearted & helpful people in here who can help you with pretty much anything you need to know.
Your 'fell apart in the car park' story is familiar tome as it will be to many. I cried for a long time after the initial diagnosis finally sank in.
6 years later things are nowhere near as bad as I feared.
Its great to hear that you are getting on well with your GP.

Elegant Fowl

#16
I was diagnosed in Feb or March - can't remember for sure. Symptom that sent me to a neurologist was a very noticeable tremor in my right hand. Was first put on amantadine with little effect, then put on mirapex (mirapexen) with some relief, but not much, and finally put on a combination of amantadine and mirapex and the tremor disappeared. The only side effect (I think it is a side effect) is mid afternoon exhaustion but it is cured by a nap. Except for the tiredness, life is much the same as it was before my dx -ie- pretty good.

#17

thanks for your message like you i am ok with who i am now

i am the lead person of a group called east Kent working age group, WAG for short.we are a small group and have a program of events for over the year.  keeping busy and going to the gym keeps me going . and my family are my strength,