Suspected Early Onset PD


#1
Hi,

I'm new here and found this place quiet accidently while doing research. I'm 22 years old and after going to my doctor recently I was recomended to a speacalist, my doctor believes i have parkinsons disease. This is the second time i'm going through tests for my symptoms, my last doctor in my home town(about a year ago) thought i had epilepsy, i had tests and things never went any further.

But in the last couple of months things have gone from bad to worse, I've had symptoms of shakes/tremers in my right hand for over a year and half, sometimes it gets so bad i can't do anything. My mum is disabled with lupus and i used to be her career but it's kinda depressing when you can't hold a knife to cut your own food because your hand wont stop shaking.

I recently moved near london with my bf and he encouraged me to go see the doctor again after my symptoms started becoming more noticable. I've started freezing most days, I'll stop mid sentence and then repeat what i was saying, or in one case i froze while boiling pasta. I haven't slept properly in nearly a month because my legs either cramp or just feel painful, like i can't get into a comfortable position or sometimes i just feel like i need to be doing something. I try to nap in the day but i think this makes things worse. I have bad balance and co-ordanation, i'm always dropping tings or tripping over, my bf recently counted how many times i tripped while out with him and count 25 trips in an hour.

But on top of everything else, I'm not very educated in parkinsons, i never thought i'd need to be, i haven't told my family anything yet, but my bf knows. This scares the hell out of me because i'm and artist and the thought that maybe one day i wont be able to draw or paint cos my hands wont stop shaking scares me. So i'm hoping i can educate myself through this wonderful site and the people who are on it.

#2
Oh bless you Magpie, you have come to the right place. There are many members including myself who will listen to you and help in any way they can.

I am glad to read you have the support of your boyfriend, well done to him. There will come a time when you will tell your family but only when you are good and ready to do so.

Keep drawing and painting, and please keep posting, you are not on your own anymore now that you have joined this extended family.

The best of luck to you Magpie.

Lots of love
Radz xx

#3
welcome magpie,
you will have wonderful advice from this forum and always someone to talk too day and night,were just here to listen has well.also there are other forums on parkinsons,would you like me to pm them for you?

love janine:smile:

#4
A very warm welcome to you magpie
A dx of pd is scarey espically at such a youg age But there is no need to be scared of pd.
If you are dx, it is not the end of the world. You will find ways to make life easier & you will still be able to do things you enjoy. Maybe a little slower , maybe in a different way.
I am so pleased that you have a supportive boyfriend
With my very best wishes

#5
p.s. magpie PUK produces some useful publications. Go to the home page, click on publiations & see if any are of interest to you. You can download them
take care

#6
Hi and thank you all for your kind comments. Just being able to look through this site and see advice of other members and how others have adapted helps me be greatly optamistic. My bf gets me to talk about it often, but he can't really help ease the stress or worry because he's stressed and worried too. Being able to talk to a community of people taht have gone through the same thing helps greatly,

One of the things that has me stressed is how long diagnoses will take, having had tests last year i wonder if i'll even be diagnosed. That being said i have just moved from a small farming community to a big city and perhaps that why why I've been refered to a specalist so quickly. Part of the stress and worry is not knowing whats wrong.

This websites also helped me and my bf notice more symptoms that we never realised were symptoms, such as hallucinations and being active during sleep.I have hit my bf a number of times in my sleep while having a nightmare, or in one case actively sat up and shaken him awake and stared at him for 3 minutes before rolling over the sleep, none of which i actually remember though, these are things that i didn't mention to my doctor because i didn't realise they could be a symptom, so now i know what else i should mention to the specealist.

#7
Dear Magpie, I'm so sorry to hear of the stress you must be feeling, and at such a young age too. It is strange, but when I was diagnosed there was a sense of relief. As you say, it is the not knowing that causes a great deal of stress, because your imagination can run away with you. You will find this site a mine of valuable information, in fact more so than your own neurologist probably. Welcome.
Kind regards, Carole.

#8
Hi Magpie,

So hope you get answers very soon from your specialists. If you don't get the response that you need, ask for a DAT scan, this gave me a positive diagnosis and results take about 4 weeks approx ( i had to wait for 6/7 as had mri as well). My heart goes out to you at such a young age and i'm pleased for you that you have a supportive B.F. I don't think anyone understands P.D until they've been diagnosed or know somebody personally who has it. This forum has been my educator and i'm glad that you have found it, lot's of support and advice to be found on here.

Best wishes to you,

Diane

#9
Hi Magpie,

Ive had juvenile onset PD since I was eight , im now 42 . Its not all doom and gloom and there are some great people on this forum who will give you loads of support and advice , inclusing me

best wishes

Matt

#10
Hi Magpie,

Welcome to the forum. I am so sorry you've had to come here but am sure you will find useful advice from the people here.

The fact you are still having tests must surely be stressful. Once this is finished and a dx given then you can get on with living and taking medication, if need be.

You mentioned being an artist: I have read that a few pwp have actually taken to artistry since dx. Artistry and other hobbies such as bonzai, help dexterity and may help "retrain the brain". So please do not think you have to give up on this career.

best wishes,
rico

#11
thank you all for your kind words. I received my letter for an appointment with a nurolagist. But disappointingly i wont get to see him/her until a week before my 23rd birthday next year, which is about 4 months from now.

I didn't expect to be seen asap, I expected to wait a month or even not see him until December....But I take what i can get and only hope that they don't cancel. The symptoms get me down though, and I've become easily angered or depressed recently. I'm just so tired all the time because I can't sleep, my bf is telling me to go to the doctor to get sleeping pills, but I don't think sleeping pills are the answer. Anyone know how well they'll work, I have had a full nights sleep in 5 weeks, only getting maybe 3hrs max.

#12
Hi Magpie, like everyone else I feel for you and what you're going through. The doctors are generally so careful about not labelling people too soon when they are young but it is so hard waiting so long, I know. It sounds like your symptoms are affecting you strongly so it might just be worth contacting the doctor's secretary to explain this and ask her to let you know if there are any cancellations before your appt in four months time. Or drop them a line to request same. If your diagnosis is confirmed maybe you will be offered meds and those meds can do wonders for you and hugely reduce symptoms and make life so much better. I'm in my 30s but you are even younger and it is fine to ask things of doctors as only you know how hard things really are for you. And PD can create creativity too, and your skills will help you cope.
best wishes, Jo

#13
Hi Magpie
I've been on Amitriptyline for over 5 years to help me sleep and it works Its an anti-depressant (which I'm not) but it somehow relaxes your brain when taken approx an hour before bed-time. You could maybe ask your GP about it.
I know what its like to go without a decent sleep especially if you are still working
Good luck