New diagnosis of PD - heavy, weak arms, hands, shoulders

About Parkinson's and health Newly diagnosed
1

Hi. At 53 I’ve just had a PD diagnosis. My worst symptom is heavy, weak arms, shoulders and hands.
I’m into my 3rd week of co-careldopa (1, 3x daily) but my arms, shoulders and hands seem worse.
Is this a common experience? Will a prescribed increase in dosage help?
Looking for advice and hopefully reassurance
Cheers

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Hi Dusty,

I have the weak hand,arm,shoulder thing too.

I find it a real struggle to sit up in bed. The meds improve things radically - after they start to work, which takes half an hour.

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Hi Dusty, I can’t help you with answers I’m afraid. However my husband also 53 was diagnosed in November. He is also having problems finding a drug that works at the moment. So far he has been on Ropinirole and now patches. Neither which have worked as of yet, if anything the drugs have made his tremor much worse. We do understand that it is going to take time to find a, drug that works for him.

Good luck with you finding yours.

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Hi Dusty, my husband aged 60 was diagnosed 3 weeks ago and is also taking the same medication as you. His symptoms have significantly increased since he started the meds, extreme weakness in arms, legs, constantly tired, loss of appetite, constipation, his hand tremor is worse. Despite reassurance that this is quite common until medication starts working or having to try different meds he is convinced that he has MSA of the worse kind, the Parkinson’s nurse and GP have told me that anxiety and constipation can stop the medication from working as well as it should do. He is at this moment looking into making a will and is stressing about the fact that the next available appointment with a solicitor is in 3 weeks time, thinking it will be too late by then.
I wish you well and hope you are managing your mental health.

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Hi Pufflin

I’m not certain what MSA is tbh. On starting my meds, my symptoms got so bad I nearly stopped taking them. I read a post on here from someone who asked a private neurologist about the effects of too low a dose of dopamine meds and was told it can be ‘contra-therapeutic’.
I’m now on 2 co-careldopa 3 times a day. I have noticed a slight improvement in symptoms, however I do feel there’s more improvement to be gained, a discussion I’ll have with my PD nurse in 2 weeks.

ALL THAT SAID… last year I was prescribed Amitriptyline for discomfort (nerve pain) in my left arm which I now know was/is caused by PD. I stopped taking it when I started my co-careldopa thinking this would rid me of arm pain. However, it never had much of an affect. So 2 weeks ago I restarted my amitriptyline, the lowest dose, 10mg an hour before bed. This has significantly improved my daily functioning. I still think there’s room for improvement but I feel much better than I did a few weeks ago. I can dress myself again, do housework, much to my wife’s delight, potter in the garden and even cook. Now I’m no Dr but I do know Amitriptyline is actually an anti depressant and I know it is used to block nerve pain and other signals.
I would advise you speak with your husband’s PD nurse/neurologist.
Wishing you and your husband all the best and hope he sees significant improvement soon
Cheers
Dusty.
PS… I’ve just googled MSA. I’m assuming your husband has had the necessary scans to diagnose PD? (CT, MRI and SPECT). If so, I’m sure these are accurate in diagnosing PD. If it was ‘something else’, I’m sure it would have shown up on the scans. Hope this post helps.