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PSP Association
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Go or neurologist

Hi all

Just a quick general question. How do we distinguish between symptoms of psp/ cbd and ģeneral age related problems. I find myself getting in muďdle deciding should I go to my gp or neurologist.

With cbd is there a pattern/ path of symptoms? Sos if I am babbling, I think this horrible illness is starting to go up the gears for me. Sos I am 58. Diagnosed with Parkinson's in 2013, but rediacnosed with Cbd in 2015.

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We use both ~ Neurologist for current medication information and medication management and tracking of disease. GP for regular stuff - runny noses, etc.

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You cannot tell. that's why one has experts and unless one is a private patient can only see a neorologist via your GP

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My hubby has Cbd.He is 59.Mis diagnosed for 3 years,they didnt know what was wrong.Finally diagnosed in Jan2014.The movement disorder consultant performed loads of scans etc but it was the alien limb that was the give away.Many symptons are the same,falls,poor speech.funny vision etc.He now can no longer walk or talk and has had a peg for the last year.A cruel existance.We have never been under a neurologist,as we see the consultant that made the diagnosis.GP just for the usual things.Sadly in January i could manage no longer mentally and p hysically to be his 24 hour carer .He is now got excellent care in a nursing home and i visit alternate days.

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Really sorry about your diagnosis, Brian. You are so young for this. We found our GP most useful for practical purposes after the diagnosis of PSP was made by the neurologist. The GP communicated with the neuro if there were questions. How good is your GP?

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Dear Brian, an MRI scan would be best. My Barry had a few over the years. The last one was in November 2016 the "humming bird " pattern was very visible which is a sure sign of PSP. Also read as much as you can on PSP and stay tuned to us. Everything helps.

Wishing you 💛🙏 Althea

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Out of all of my dad's health professionals, we've found our neuro nurse to be by far the most helpful and knowledgeable. The consultant neuro even admitted she knew more than him about PSP. She's been brilliant, and has had to correct the GP on a couple of occasions when inappropriate prescriptions were issued.

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Hi brian Use gp for ordinary ish symptoms but also to get to neurologist and when there make another appointment yourself otherwise you're back to square one and have to start the whole pain in the a.... process again. Good luck.

Marie

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There are a few classic symptoms in each to help determine what is being diagnosed, alien limb in CBD and the inability to look down in PSP. Dad has the alien limb in right arm and leg with it is starting to show in the left arm.

To be fair to the doctors no 100% confirmation can be made without a brain autopsy.

Ron

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Brian,

Tell the GP you need to see a neurologist ..Have an mri and a mylogram you can narrow down the possibilities if they are accurate tests and you have a good Dr. My wife received a correct diagnosis with a Mylogram ...The neurologist is the key ! I wish you luck ...jeff

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Our first neuro said PSP bcz the falling started so early and with Parkinson's it comes on much later in the process. The quiet speech and tiny writing presented early on and a left leg drag.

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Hi Brian my brothers I think was that his shoulder was hurting him a year or so later he began falling backwards, then he started looking like a drunken sailor, he was seeing his Doctor for about a year but their was more symptoms, they did a brain scan but missed not reading it right, a year later finally went to a Neurologist where the Doctor saw his cells were disappearing and the symptoms were there with the eyes a tail symptom, diagnosed with PSP in 2014. Nettie

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