Hey folks - newly diagnosed


#1
Hi

I have just been diagnosed with YOPD at 29 (going on 30). Like many people with PD, my symptoms started at least a year ago or more, such as stiffness, speech, handwriting, slowness of movement and lastly - tremor (all right side).

I went to my GP in March and was referred to a neaurologist. After an MRI to rule out other things I was later admitted to hospital where I had MANY tests over a week period.

After they all came out clear, I was put on a course of levodopa (Madopar)which after a couple of weeks or so started to have positive effects - increased movement inc better gait, hand movement, more arm swing, better handwriting, better speech.. not back to 'normal' - but better than it has been.

I went back to my neurologist this week and was diagnosed with YOPD, which I thought he would having researched PD and looking on this site.

Now its time to properly start to come to terms with it, and look forward in a positive way.

Parkinsons.org.uk has been so so useful and the people on this forum have been very helpful and caring! So thanks.

I will be on here often, as I have been over the past few months.

Best,

David :smile:

#2
Welcome!
Like you I'd diagnosed myself before the docs did. It was still a shock though. I was 52 but still felt young!
Lots of suppport here from people taking different approaches to managing. My version is the complementary medicine route; works for me but not everybody's way.
Very best wishes
Sallymac

#3
Hi David,
Welcome! Am new here, too. Was dx'ed in May with YOPD. My MDS is real big on exercise and I have to agree that it makes me feel better. Glad the meds are helping you feel more like you. You sound like you've got a good attitude which is critical. Best wishes, Lin2

#4
Welcome, hope you feel ok and can get to grips with the future you have. we will offer any support you need.

#5
Hi David
Welcome to forum. I too have YOPD being in my 30s, diagnosed two years ago but had symptoms for 6 years. Medication is a marvellous thing and I am now enormously more able than i was last year, able to work full time and do most of the things I used to do. You sound like you are facing this with determination and that will serve you very well. There is loads you can do to take care of yourself and recover from the diagnosis which, whether it be a shock or not, is a big deal, a life changing event. Very best wishes for you in your coping with this and getting on with life.
Jo

#6
hiya david welcome to the forum ,im ali i bin dx since i was 31 im now 42 ,as u most prob no there lot of surport here on pduk and good friends also to make,i hope to see u around the forum ,when u passin the cafe pop ur head in for a brew ,we dounna bite x:smile:

#7
Hello and a very warm welcome to the forum David. I'm sorry to hear about your dx at such a tender age, but I know that you will get support and advice on here.I was dx 11 years ago, so a bit of an old hand at this now, any questions just ask there's always somebody around that will be able to offer some answers, that's the good thing about having contact with other pwp. I hope to see you around the site.

Glenchass

#8
Hi David & welcome, I'm a young onset pwp also although i'm 48! but still very young at heart! Massive of help and support to be found on here:smile: Happy to chat and share info anytime. Best wishes

David - Jo72 - Lin2 and any others
has anyone signed up for Moving Forward Together event in Stratford-Upon-Avon?

I look forward to meeting you if you have.

Diane

#9
Am I the only one who thinks davids symptoms can't be parkinsons ?

#10
No need to go on meds to diagnose - neuro will be able to uncover symptoms - speech being effected is one of last symptoms - not early. Also if parkinsons dopamin would work almost immediately on level of symptoms david describes - not 2-3 weeks

#11
hey david am looking forward to further posts from you i too have yopd was dx bout 2yrs ago .

#12
Speech change was only slight. Started on a low dose initially of levodopa. Other symtoms improved after meds.

#13
A bit confusing.. Comments like the last couple. Trying to come to terms with this and comments like that don't help. I am not accessing this site for 'expert' analysis - just some kind words and support and for some valid info. This site has been so helpful so far.

My symptoms were worrying, to say the least, and my speech has been affected if only very slightly - at times. The other typical symptoms are all present and a diagnosis made. I was examined many many times by several doctors and specialists.

I am just trying to come to terms with this disease and hope to use this site to support me in this, to some extent.

David

#14
Hi David

welcome and hope you find the support you are looking for. No two people with PD are the same and neuro's do not diagnose lightly.

I was only diagnosed in March myself and can remember the feeling of shock and fear at the news. I try to live in today and not dwell on the future as it is too scary.

I have felt quite ill on the Mirapexin which hasn't helped but seeing neuro soon and have every faith that he will be able to help alleviate the side effects or change the meds.

Caroline

#15
Hi Tapehead,

I did not bother to post until I saw that Rubbish's rather surprising comments had indeed been unhelpful to you. Your symptoms (except for the speech) were exactly the same as mine - typical - and my diagnosis was "probable" until I responded to the Levodopa when the probable was dropped after the second consulation. Dopamine challenge is as far as I know quite usual to help confirm the clinical diagnosis although as in my case they don't always tell you that is what is going on. As for the speech I watched a programme about a young onset female mid-career teacher whose PD first manufested with speech problems which forced her to give up teaching and start a catering business.

#16
Hi David,
I was diagnosed two years ago with similar symtoms to yours, with speech being the worst and most difficult to handle.
My MRI scan and blood tests were normal...the DAT scan did indicate PD though.
I haven't started on L Dopa yet...trying to hold out a little longer.. I am on Neuro Patches which kind of deal with everything apart from speech.
There is a lot of information and support here:smile:
A warm welcome to you

#17
Hi Tapehead81,

Welcome again! I am sure you will find this site useful. Like all meds, Madopar takes time to work, esp. if you are titrated from an "ineffective" dose of 62.5mg up to the minimum (125mg) then this will be the case.

In any case, congratulations that it has worked so fast! And I'm also glad about the arm swing. The madopar works on mum but as far as the arm swing goes, it is stll non-existant! :cry:

So from what you describe you are getting great results.

Best wishes,
rico

#18
Hi Tapehead 81,

I was dxed at age 41, now 50. I was amazed at the comment from Rubbish. PD is very much a disease that strikes each and everyone of us differently. I can understand how you would feel confused about this sort of comment. I was diagnosed the same way as you were, I had very small writing, no right arm swing, and slight right arm tremor. After the usual CT/MRI scans to rule out other possibilities, I was placed on a dose of Madopar which was slowly increased over a month. On my return to the neuro, I was like a new man, unfortunately this confirmed for him and me, yep it was PD. Welcome to the forum, most of the people here have good intentions and good advice to offer, I hope you can filter out the good from the bad.

Regards,

Andy

#19
Thanks for your comments - Andyned, your path to diagnosis sounds very similar to mine. The Madopar was simply the final piece of the PD puzzle. I feel much more like me at the moment.

Thank you to everyone who have given me some great guidance over the past months since I joined this forum. RICO - you too have been very helpful, thanks.

I realise now that although I kind of knew (feared) this would be the diagnosis, it is only now that I realise what a big thing this is to overcome and come to terms with.

The only way now is forwards, so off I go!

Be back on here often I'm sure.

Thanks again folks! David :wink:

#20
Hi Rico,
Excuse me as I haven't checked in detail your previous postings but I noticed you mentioned here that your Mum is benefitting from drugs but not getting her arm swing back. I have PD left side only and as i started meds just over ayear ago I gradually increased the dose whilst making the most of the incremental improvements by doing lots of whatever the arm and leg could start to do again - eg as much 'proper' walking as i could manage now that the leg walked instead of limped - then I got to the point where I forced the arm to swing even an inch or two and with the meds, it gradually got better and better - but i am not sure it would have done so with meds alone, as it was extremely weak from 5 years of not swinging at all. My neuro said I helped maintain 'brain plasticity' by doing this - which is a good thing. I think the tendency can be to concentrate on a leg as walking is essential but less so to work on an arm cos you can get by with one arm. I guess, the meds affect the whole body, but sometimes you have to remind it what it should be doing, and help it build strength back up, in order to make use of what the meds can offer. It took me a long time but it paid off. I do beleive at least in my case that practising walking and arm swinging supplemented what the meds offered me. Of course I do not know if this would be relevant in your Mum's case.