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.