I wrote a post a few month back.

I was dxed with YOPD and I think it could be CBD but not sure as my right hand is extremely dystonic it's gone into my right leg foot now I am not sure but it feels in the last week my left arm/hand is slowing down.

Anyone with or know someone how fast did it progress? And how?

Am I too young at 35 yr old to get this?

I am on Stalevo 100mg 4x a day doesn't always work but when it does there's a huge improvement of motor skills... I read that Parkinson's meds don't help if it's cbd/psp?

Thanks for any replies.

16 Replies

  • Am I just over thinking things and worrying over nothing?

  • Really sorry, Stanny, that you are dealing with all this at so young an age. You are not the youngest person to have come here with a similar diagnosis, but you are one of the youngest I have heard of. Unfortunately, nothing is ever absolutely true for everyone with these diseases, but it is generally acknowledged to be true that Parkinson's medications don't work for psp. Progression varied greatly from person to person. I wish I could be of more help. Where are you, may I ask? Do you have a doctor you trust?

    Peace, Ec

  • I am from the UK.

    Yes I seen my doctor about 3 weeks ago and she said she's happy with my response to levodopa.

    Maybe I am worrying about nothing, I am a born worrier.

  • Try not to fret, but know that we are here for you to air your concerns any time. Hugs, Ec

  • And she is doing genetic testing for Parkinson's disease... So she believes it is.

  • Sounds like everything that can be done at the moment is getting done. Just have to wait on test results.


  • Thanks, I know you are right.

    I have just taken my meds about half an hour ago and everything is great and moving it lasts about 3 hrs it's awful when I go into off state... Not sure the meds would work if it was cbd/psp?

    Also the neuro is testing for dopa reponsive dystonia... I had a datscan come back abnormal if that's anything to go on?

  • All I can say is dad, has CBD, never responded favorably to any of the normal Parkinsons meds. The meds did not do anything normally and when the dosage was increased he would have hallucinations, confusion etc.


  • Hi, I was diagnosed with Parkinson's first aged 50 and had the diagnosis changed a year later to CBD. All my problems are down my left side - I first had cramps in my left ankle and it kept turning in on itself. My left arm stopped swinging when I walked and I tend to hold it in a fixed position across my body. 3 years later, and its still only my left side - symptoms are slightly worse. I have a lot of pain down my right leg/knee probably due to how I walk. My fatigue/poor sleeping and anxiety has worsened but only slightly.

    I am part of a research study looking at Parkinson's Plus and was told by the Dr I am still mild in my symptoms even though it doesn't feel like it to me.

    I hope this has given you a bit more info.

  • Hi thanks for the reply.

    Have you tried any Parkinson's medication? And did it have any effect on your CBD?

    When my meds kick in all my symptoms are relieved.

  • I've been on Sinemet since day 1 - that was initially 2x per day.

    Now I'm on Sinemet 4x per day/Ropinirole 8mg per day and slow release Sinemet 2 each evening. My symptoms remain quite well controlled - but I do still get "off " periods - especially if tired or stressed. Sometimes just because but mostly I appear to be stabilised. So I guess I have responded well. Sounds like you are the same.

  • Yeah that's good that the medication works for you.

    What caused them to change your diagnosis from PD to CBD?

    Both my Neuro and Parkinsons nurse believe that I have Young Onset Parkinsons Disease and that is my offical diagnosis due to my response to the meds(walking normal,can use my affected arm/hand to 90% rapid movement etc...) and my appearance when I seen my Neuro the 14th of July she said I looked well.

    As my diagnosis of Young Onset Parkinson's Disease my Neuro is doing genetic testing I guess she wouldn't do that if she didn't think her diagnosis was correct?

    I guess I could be worrying over nothing... And it's just me thinking worst case scenario.

  • I believe it was down to the DAT scan and the MIGB test - something to do with how the heart has a lower uptake in certain things ?????? I suggest you GOOGLE it as I don't entirely understand. This was the test that swayed the diagnosis.

    All I would say to you is don't get caught up worrying about the ifs and buts - easy to say I know, but I've been all consumed at times and I should and am know, accepting of how things are in the here and now,

    Stay positive - sounds like youre doing o.k !!!

  • Hi I forgot to ask do you have a tremor?

  • I do but it is only ever slightly visible at times of extreme stress. I usually get what I call an internal tremor - a fluttering like feeling. Tremors are not usually seen in CBD as they are in PD.

  • Two things AGAINST your having CBD:

    * response to PD medications, particularly as evidenced by off-periods. (Wearing off the meds can cause the dystonia, as your MD has probably told you.)

    * your age. According to the diagnostic criteria, youngest age is 40.

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