Has anyone been wrongly diagnosed, or had a diagnosis mixed up between PD and MSA or PSP?
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Hi there
I was misdiagnosed last year after a very brief NHS consultation.
After a 10 month wait for my appointment, I was told I had FND and that I would be seen again in 10 months time after following the recommended treatments of CBT and Physiotherapy. However amy symptoms became worse even though I followed the advice so I followed my gut feeling and got a diagnosis confirmed privately after having a DAT scan.
It can be very frustrating I know so my advice is to follow up your diagnosis if you think it may be incorrect.
Good luck,3
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It is so frustrating, R was diagnosed with Parkinson’s in Dec 2021 but it also suggested it could be a Parkinson’s Plus Syndrome. I have got deep diving into medical articles and I think R ticks a lot of boxes for MSA. He is refusing levadopa medication so it is hard to tell whether his decline is down to that or an alternative diagnosis. There is a very good forum on Health Unlocked specifically for MSA so might be worth a look.
I think the best thing to do is make thorough notes about the changes that you see as a reminder for when you do get to see a consultant next.
It’s really hard to tell Parkinson’s from MSA or other Parkinson’s plus syndromes early on as there’s quite a symptom overlap. Unfortunately it tends to become more obvious over the next few years if it’s a Parkinson’s plus syndrome.
#Jedwards if you’re worried about it have a chat with your PD nurse or if you’re able your Neurologist.
#RachRob none of my business but starting l-dopa was the best thing I’ve done for my symptoms and R can always stop it if he doesn’t like it. I guess that is something to discuss at his next appointment.
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Thanks Podd, I keep nagging but I really don’t think that helps. Because R doesn’t have a Parkinson’s tremor, he thinks he doesn’t need to take the levadopa but I am sure it would help with his rigidity and loss of strength. Will keep trying
I barely have a tremor. The only thing you need for a diagnois of parkinson’s is slowness of movement. Everyone thinks of tremor because it’s obvious and common. Loss of strength is probably partly slowness and partly fatigue. L-dopa is good for slowness and rigidity.
I don’t know if this will help but it’s the NICE page on diagnosis of PD.
tremor is at the bottom of the list.