Desperately seeking answers

My husband who is age 38 and up until March this year was a healthy, fit, active, strong man has been suffering from dystonia in his left hand, balance and coordination problems, stammering and struggling to find words. He has had an MRI which was normal so they have ruled out tumour, stroke and MS but Dopa Responsive Dystonia and Parkinson's were mentioned and he was prescribed Levodopa but his response to it has been disappointing and they have twice increased his dose but with only a moderate response. This morning when he got up his fingers were twisted as bad as ever and his wrist was also turning.

I have read that CBD often starts with a limb problem and doesn't respond well to Levodopa and I'm now terrified that it could be this. He has been lucky and managed to get an appointment with his neurologist this morning. What other tests should he be asking for?

18 Replies

  • Hello Maxinoz. From what you say it certainly sounds as though your husband's symptoms may be like CBD or PSP. Unfortunately there are no definitive tests that can rule it in, only tests to rule other things out and it sounds as if you have done a lot of that already. You should definitely mention your fears about CBD/PSP to the neurologist. My advice is to go on the PSPA website and print off the section for professionals and take it with you to the appointment. There is good advice there regarding diagnosis. Of course if the neurologist is any good he will be considering this as a possibility anyway, but it may be helpful to you to have the information with you so that you can flag up similarities with your husband's symptoms.

    Hope you get on OK this morning and do keep posting, whatever the outcome.


  • Don't be shy to ask the medics. Ask about everything. The trouble is that there is not a lot of knowledge out there about the diagnosis of these diseases. I was asking, if it was PSP that my husband had, for two years ,before they finally agreed that it was. Ask about support too. Sending my best wishes and a big hug. X

  • Unfortunately I couldn't go with him to his appointment today but I armed him with a list of questions and reminded him that he is more important than the Doctor and not to worry about p'ing him off with a list of questions.

  • Meant also to say that 38 is very young for either of these diseases so fingers crossed that maybe it's something else that maybe more treatable.


  • Thanks so much for replying!

    The problem is that I haven't even discussed my fears with my husband. He is staying away from Google and leaving it to the experts while I am reading every little bit of information I can get my hands on!

    He saw the Neurologist earlier today and he's to have another MRI tomorrow and he's trying to organise a DaT scan too but they aren't readily available here (we are in Perth, WA). Neurologist told him today that it's definitely Parkinsonism of some sort.

    I think the Neurologist is really good and I'm pretty sure he's being thorough but I just feel so helpless and desperate for my hubby!

  • My dad had a Mri of the brain, that gave some clues but we had to wait about a year for a definite answer

    Dad too, tried levodopa which had no positive effect

    I pray for you both it is t Psp

    Good luck X

  • Oh goodness meant I pray it ISNT Psp!!!!!!!

  • I knew what you meant! Another MRI tomorrow!

  • Oh I hope you get some answers George had a brain scan which confirmed PSP, like satt said I hope and pray it isn't PSP. What hospital are you going too?

  • He is attending Hollywood Hospital and St John of God. We are in Perth, Australia but from the UK originally.

  • We are in London good luck to you both xxxx

  • I do hope it's not PSP! I was like you, researching online every night reading all about it, my family told me to stop believing everything I read online, but I knew deep down what was wrong with him before he got the diagnosis, that was two years ago.

    I also agree that 38 is very young so fingers crossed for you both it will be something else that is treatable, unlike PSP.

    Keep posting, this site is a tower of strength and will help and support you....

    Love and hugs....Pat xx

  • My father only got diagnosed CBD a few months ago his order of scans/ tests was mri ( this showed some brain shrinkage ) the Dat scan they thought Parkinson's this showed yes Parkinson's signs , then the one that gave the clearest answer to out neurologist was the PET scan he said the brain needs glucose and this scan shows up which bits of the brain are are dead . Then we got told def Cbd . My dad is now on Amantadine , it's not stopping the weak left side or stammer but he's improved mentally it's like they've made him nicer ? I don't know if your husband has dementia type problems this is a part of cbd ? I hope for u he has something else .

  • Maxinox

    It sounds like you are on the path we have all been on as we have struggled to get a diagnosis. Please, don't give up. Keep asking until you have answers.

    You may find something here which will help you clarify CBD and PSP in your own mind.

    Even print something out and show it to the Neurologist?

    If you are in the UK. We have three levels of service:

    Primary Care - G.P.s' etc

    Secondary Care - Hospitals and Specialists

    Tertiary Care - The senior specialists.

    A neurologist might be Secondary or Tertiary. If they are secondary ask for a referral to Tertiary if it turns out to be complex. PSP is often 'treated' at the Tertiary level.

    I do hope this helps a little.

    But of course not all atypical Parkinson's is PSP or CBD.

    Best of luck.


  • The missing link - But I expect you already have found it.

    Agreeing with the others - 38 is exceptionally young for PSP or CBD.

    Good luck.


  • Hi my husband has had CBD now for 11 years. It's not easy he too used be be strong did everything for us, the carbid opa/Levo will only help so much he takes 3 pills four times a day. At night five pills, we are seeing his dr today to see if we can get medical marijuana. Wish I had better news for you you will be in my preys. Marge

  • My husband has CBD. First I have to say that no one case is the same as another. That said, what you describe does not seem like CBD. It is more likely another Neuro condition. You said he had bad contractors, bent hands Tec but was able to go to appointment on his own. From experience , if the contractors are that bad there will cognitive problems as well.

    Don't lose heart. Don't panic. Keep a calm and clear head to ask questions. Your life, your body. Own your own treatment. Do it together.

  • Hi Maxinoz, just wanted to mention 2 years before my brother was diagnosed with PSP he had a Mir on his brain, when he saw a the neurologist 2 years later he was alarmed that the lab tech failed to see the brain shrinkage in different parts of the brain, they put him on levodopa, and said if there was no change to stop taking the medication which he did, went back to see him and that is when he was diagnosed with PSP he could tell by the shrinkage in his brain and the fact that the medication did not work, they can tell a lot by the eyes also. Praying for a good outcome for your husband. Nettie

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