YOPD - Newly diagnosed - Hard to take in


#1

Hello all,

I am 38 year old male ( previously very sporty ), diagnosed with YOPD ( whatever that is ), last month July 2016 - all a bit of a shock!

I'd be keen to know if there is anyone out there like me in and around the London area as my symptoms appear to be unique, at least according to my neuro:

- I have one problem, walking, which started 4 years ago and progressively got worse. I have had a number of orthopedic ops in that time, knee ligaments, disc in lower back etc and now diagnosed with YOPD. Oh, one doc along the way thought I had ALS/ MND, I don't

- I am now on sinemet, 25/100mg ( 2 tablets 3x day so 600mg per day ) and 4mg rotigotine patch to cover the down time. I walk perfectly on these meds and am effectively normal. Work colleagues, friends etc can't believe how successful my lower back surgery was - I have not told them about PD ( I feel like a liar! )

- Without meds, my left leg will tighten up meaning i can barely walk, I have not walked more than 50 yards in one go in the last 3 years.. Hamstring and calf will go rock solid and will not switch off, followed by glute and lower. back That is all except for the morning or if I fall asleep on my train commute into London, then I walk near perfect for about 5mins. Massive diurnal fluctuation

- I have no tremor or other symptoms. I have a hightened sense of smell so I therefore suspected DRD.

- Abnormal DAT scan and neuro dx YOPD

 

Questions ( many thanks in advance for reading this and an even bigger thanks for any answers to my many questions):

1. What is YOPD? My neuro is a lovely guy and tells me it is not such a bad diagnosis anymore. He tells me I am exquisitely sensitive to levdopa ( literally 1 hour after taking one tablet of sinemet for first time, improvements were noticed ) and I will alsways be so. He says, my PD is dystonic and I will never have tremor

2. The drugs are great, I have my life back but I cannot sleep at night, any recommedndations?

3. Anyone think my symptoms don't sound very PD? Anyone have a false positive DAT scan

4. Anyone know where you can get genetic testing for DRD? My mother is badgering me to get done. Clearly dopamine, or lack of, is my probelm and sinemet solves my problem, 100% so it is either PD or DRD?

 

Guys, I'd love to hear from some of ya's.

 

All the best.

 

 

 

 

 

 

 


#2

 

Hi

1 Young Onset Parkinson's Disease ~Anyone generally below the age of 50 ish  is usually
label'd as early or young onset, many of us are below or around that age on the forum as are many sufferers

your reaction to levodopa and the aid of the datscan result together is usually considered together with other markers to give a fairly confident diagnosis, effectivness of levodopa  does apparently change over time and 30% of PD sufferers i have read don't have tremor. i have read tremor can come and go over our life time in the different stages of PD.

2 I found being fully dosed up kept me awake at the point when i was trying to wind down to get too sleep, so i lessened the dose for that and changed the time of, i also take a small dose of amitriptyline overnight to relax the nerves firing but thats just me.


3 there are many symptoms of PD that are unque to each of us that are not limited to the symptoms we have at diagnosis we go on to develop others, some subtle over time, while others lessen with drug treatment or change with it. and a datscan result isn't a diagnosis in itself just a aid towards it as i understand it.

4 lack of dopamine is something we all shar

I'm sure its all a shock to you and those around you a the moment it does take time to come to terms with it we've all asked ourselves that question over and over do we have PD?.

 


#3
Many Thanks Sea Angler

#4

Aye aye Jeddy

i am on sinemet plus   And rotigotine 12mg  and a carbon copy with left lleg tightening my toes.curl downwards on my left foot as well , my trainers have the left one nackerd on 2pairs , and yes just like you I get about 2 mins then the lower left leg feels like a banjo string and the left hand shakes , sounds strange to hear someone so close to my med and symptoms  take care 

Ian ( Scotland )


#5

Hi Jeddy,

 

If you live in the London Area there is a facebook group   for Young Onset called PLOG  https://www.facebook.com/groups/372271932847436/

In Northants we have a YOPD grooup and as this is a low population  county,  I imagine you will find one near you.  Navigate via the links at the top of the page "Support for you" and you will find a list of local support groups.  No doubt a few more YOPD's will post here later.

Although PD is often called a designer disease because of the many different experiences,However,  YOPD's do share  aspects of the disease

Is DRD dopamine responsive distonia?  It may be of  interest to you to know that up to one in four of people dx.with PD, show no sign of it when autopsies are done on their brain.  But whatever it was it responded to the meds.


#6
Thanks Eileen Patricia and Ian up in sunny Scotland. Yes, DRD is dopa responsive dystonia - my mother has a friend who has it and feels quite strongly that this may be my problem. In fact I would never have made my way to a movement specialist had it not been for her suggestion. Thanks for the autopsy stat, yes, I guess if the drugs work then does it really matter what I call my problem. Thanks again guys