YOPD or something else?

Hi all I am 36 yo man and was diagnosed with Parkinsonism after getting an abnormal DATscan on March 2016 (I was 35) I have had symptoms since I was 34... Recently (July 2016) the consultant diagnosed me with Young Onset Parkinson's Disease due to me responding to co beneldopa but the symptoms seem to be getting worse as of late it's really affecting my walking... Recently I had my medication changed to Stalevo which could well be an issue need to speak to my PD nurse... I don't have a tremor.

My first symptoms were my right hand not using it then it formed a dystonic look where it would claw the clawing is there all the time but can get movement time to time, then it affected my gait as I couldn't lift my right foot up towards my shin so was causing me to have a slapping of the foot now I have had a pain/heaviness in my right thigh which is causing me to drag my foot more although up to now *touchwood* I've had no falls... My left side isn't affected at all at the moment... And more recently (last week) I've developed a pain in my right hip which which in turn has affected my ability to get out of a chair by myself and my ability to walk long distances due to the pain I have been to the doctors about it yesterday she thinks it's a pulled muscle band or hip bursitis (she has referred me for a scan) also rang the PD nurse up and she thinks that my gait (slapping of the foot) has been to much for my leg and caused a muscle strain and has referred me to a neuro physio.

I have read about symptoms of CBD and that it normally starts affecting one limb normally a hand, but then YOPD has cases where their hand became dystonic... I have also read that CBD affects 40+ year olds (rare) but normally affects 60+ year olds couldn't find any information that it affects under 40 year olds... What is the youngest case you've come across as I am under 40?

How did your CBD start and progress? And how did it affect your walking progression wise?

Sorry to ramble on I guess I should take the consultants diagnosis of YOPD as they know what they are talking about... Just it feels like the symptoms are progressing quickly.

Trev

9 Replies

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  • Hey, Trev, I am so sorry about your troubles. You ARE very young for any of this, but we did have someone here who was diagnosed with PSP in his mid-thirties. I do think that the fact that you have had a positive response to the l-dopa may be hopeful that there may be something that can be done for you. Your symptoms seem all physical, too, which has to be a reason for some optimism. My guy suffers pain in his hip from the off-balanced gait - everything is connected! The pain wasn't a direct symptom of the PSP, so could be addressed. Hang on! Go for whatever physical therapy you are offered. Stretch, go swimming or soak in a therapy pool, get a massage. Every bit helps, more than you might see at one time.

    And please stay in touch. Folks here do care for each other.

    Peace, Ec

  • Trev there are other things it might be. Why do you think it might be CBD? I am not an expert but if you are responding to medication then it might well be YOPD. It might be PSP or MSA? Look at the symptoms and see which are most like yours. Then make a list so when you go to the consultant you can ask questions. My husband was told he had PSP with signs of MSA. Then just before Xmas it was changed to MSA. He had no tremor and had problems on one side of his body to start with especially his foot.

    However he didn't respond to medication despite the consultants insisting he might! So I think it's encouraging that you have had a good response. I have to say I can only recall one person on the site whose son was diagnosed in his 30's. I guess there are exceptions to every rule?

    Stay in touch as the people on this site are so good. Whatever you have they will help you through it. We all need help and I can't tell you how glad I was to find this site. Lots of helpful people with lots of tips.

    Marie x

  • Trev, Welcome though a hard welcome it is. I have to agree with the others that if drugs are helping you, then stay with it. With PSP there's not much yet that slows the onset and final onslaught of its blow. And CBD, doesn't sound much better. So stick with what is working even just slightly. I pray that you find comfort and resilience in this disease.....

    AVB

    For the Lord shall be thy confidence, and shall keep thy foot from being taken. Proverbs 3:26

    But the God of all grace, who has called us to his eternal glory by Christ Jesus, after that you have suffered awhile, make you perfect , established, strengthen, and settle you.

  • Hi Trev l too have CBD the symptons are the same as yours but walking could be worse for need a walker in the home near me t help get up an to balance when walking for scared of falling!

    I have a scooter for outside so enjoy going down town to food shop so dont need to rely on others but have help in the home

    Im 58 have had this disease 10yrs an too have inward tremors so dont shake out side where others can see. When bad Have tight mouth , jaw right hip jams up hand goes weak an curls under then heavy leg which feels like a rock then right foot doesnt move till meds log in! I only take sinemet every 4 Hrs an a CR sloe realease at night

    My specialist told me that is all they can do t help regarding medication!

    What do you take to ease your symptons Trev ? Next week off to the pool spa bath is great for exercise in there.

    I wish you well an lm here if you need t keep in touch.

    Shirl

  • Thanks for all the replies.

    My leg pain has gotten much worse I can't bare weight on it, so can't walk at all atm... I guess this isnt associated with my disease whatever it is as no ones walking was affected in this way but sure has me worried

  • My leg/joint has gotten no better and a lot more painful over the last 2 weeks where I am finding the quilt to heavy to move my leg which as you can imagine sleeping is a nightmare am lucky to get 1 to 2 hrs... I am still managing to get around the house and have not fell, just went for a walk round the block painful but managed... My balance is just fine still no falls to report and can manage the stairs but in a lot of pain.

    The Levodopa is working in a fashion I took it nearly 1 hr and half ago and it's finally kicked in to where I can use my right hand to type...Frustrating to say the least but at least I get some relief from my hand clawing up... And my leg doesn't feel as heavy.

    And to top it off I am constipated off the codeine the doctor prescribed me for the pain which is making me feel sick.

    I have read it is normally balance issues first so the pain in the hip/thigh doesn't exactly tie in with it but it still has me worried because it's been with me for 3 weeks and my leg feels a lot weaker (maybes down to under use?)

    Anyone else with CBD or a carer know how there walking was first affected?

    Trev

  • My doctor recommended I put ice packs on my lower back when I had hip and leg pain. She suggested it was nerve-related and originating in inflammation of the nerves coming off the spine there - maybe a deteriorating disc. It helped me a lot.

    My guy, who has psp, had a lot of pain in his hip for a while in the beginning, and the first symptom we really noticed was a dragging foot. For him massage and heat and ibuprofen helped some. Eventually the pain lessened, although his leg has remained weak.

    Sorry, Trev, not to be of more help. I do sympathize. Pain is exhausting.

    Love and peace, Ec

  • Yeah am pretty restless atm with the pain in my leg don't know where to put myself if the pain subsided a bit i'd be more comfortable.

    Stopping the codeine due to constipation has increased the pain threefold.

    Trev

  • Just a small update 1st of April I couldn't bare any weight without the pain being so intense.

    So went to A&E had a mri and showed that it is Transient Osteoporosis of the Hip.

    orthoinfo.aaos.org/topic.cf...

    Just got home yesterday after 11 days after physio etc...

    Said that will get better on it's own in 6-12 months, still in pain now but at least I know what it is.

    Pain to get around the house.

    Trev

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