How many times did you see your neurologis... - PSP Association
How many times did you see your neurologist before you received your diagnosis?
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i actuallly had to pay to see a different neurologist after 2 visits to the first one.
the 2nd opinion (third visit)was an immediate diagnosis!
Heart specialist told us we should check out for PD, at the end of examination told PSP, one further consultation to change medication and that was it! just referred to GP.
The neurologist diagnosed my mum the first time he saw her; however she'd been under an ENT specialist for her 'balance problems' for almost a year...
hi all
at first i was sent to see a rheumatologist he told me it was a
frozen shoulder so i was injected in the shoulder that didnt work
i had that done on about 4 times then they said it was carpal
tunnel syndrome so i had a operation on my right arm then they
said it could be parkingsons, thats when they sent me to see a
neurologist after 3 or 4 appointments and diffrent scans i was
finerly told i had got corticobasal ganglionic degeneration,
It took a third neurologist for a correct diagnosis for my wife. Misdiagnosis may be more common than correct diagnosis of PSP.
My father had been under a Consultant at a local BUPA hospital to him, where he had had a first diagnosis of Early Dementia and then later on one of Parkinson's.
After the sudden death of my mother my father came to live with my family and I. After a couple of appointments with my GP he refered my father to the local Neurologist, the diagnosis came at the end of that first appointment.
the first neurologist we saw tell to my mum she only was depressed, and we took some drugs. After 6 months we understand the cause wasn't that, we visit other 4 neurologist:nothing. One day we went in a hospital for some trouble at the blood and a nurse told us "but your mum has some parkinson disease".........
its took 8 yrs to get to the bottom of my Mums illness, she's had 2 strokes 8 and 6 yrs ago Doctors thought it was neuron disease and was only diagnosed with PSP 4 weeks ago shes slipped through the nhs cracks,as to being seen by the right Doctors, but we're beginning to get the help we need to care for her at home. When I read your site what an eye opener my Mums had the symptoms for the last 7-8 yrs.
Hi Lorra, how dreadful that it took so long for your mum to get diagnosed. I am happy though that you are beginning to get the help you need. Please remember the PSPA is here to support you too; as well as our nurse specialists.
My sincere wish is that we would have been better advised had we been prepared for the extremely rapid decline at the end. It would have been much more useful had we been encouraged to have a PEG at an early stage when there was enough stamina to stand the procedure. In the event it was too late and the patient practically starved to death, which in addition to the ongoing suffering added a disastrous burden and fear. Especially as the patient was fully compos mentis until the end. We could have told oneanother just how much we loved eachother, but without speech or hearing, it was virtually impossible to comunicate for nine months.
My husband had a problem with his balance...walking as though drunk...also with redness & soreness in his eyes. We saw a locum GP in Sept 2006 who recognised something & referred us to a Neurologist who referred for an MRI scan. By April 2007 we had PSP diagnosed...we were lucky that he knew about PSP. He then referred my husband to Neurologist at Hope Hospital Manchester for confirmation.
Fortunately my husband was diagnosed early in his disease by a movement disorder neuroligist. We started looking for answers to his waining speach. After a relative easy journey with other neuroligist and hearing specialist he was refered to his current doctor. Hopefully education will reach everyone that has a patient with some or all of these varying symptoms.
We now communicate with a text to speach computer program. This reduces frustration for both of us.
I have had symptoms the past 4 years. After being tested for everything (I thought)..... and after my worst falls to that date, I went to Mayo in MN and tho the neurologist there has given me a tentative diagnosis it still hasn't been confirmed, mainly cause I haven't passed his eye testing yet. Now I know the other clues I may discount that. In the meantime this place has been the most helpful place so far! Thank. Lucille
hi lucille
it si good that the site is good for you in USA
I fractured my ankle (badly)in2007 fallign out of my chair ! but had been having balance problems b4 that when i think of instances when i just fell fwd 4 no apparent reason
BUT i am pretty sure i must have the slow sort of PSP - the downgaze is a ilittle affected and my eyes do close a lot and i am not blinking - i happened 2 mention this to the 2nd neur i saw and that led him 2 the diagnosis(canniot wear contact lenses now) so the specs are on all the time (liek the knee pads to prevent more damage to my once nobbly knees!)
My ability 2 march on the spot has gone - my arms do something other - but i am doing some exercises with my carer to help with this and they are strengthening too
and i cannot clap in rhythm or the appropriate no. of itmes (2 i think) when asked
i gave up driving after crashing my car over 12 months ago - b4 diagnosis but it was an accccident waiting to happen and i realised that my co-ordination and judgment were poor and getting worse
take care and keep smiling
love jill
xx
Following MRI my Dad was diagnosed at first neurological appointment due to his inability to look down. The consultant (junior) was too shy to say and mentioned Parkinson's plus, but wrote "PSP?" on the prescription. So following that we investigated. His Doctor, didn't know anything about it and failed to look into it, blaming bad internet connection.
My wife was having balance issues for some time and was seeing a "balance doctor". Neither he nor the GP picked up on it possibly being Parkinson's or PSP due to the lack of tremors. Finally a friend after seeing my wife for lunch and discussing her issues went home, used the computer, called us and said "I thing she has Parkinson's". I Googled PD and her symptoms matched PD. GP was told and sent us to Neurologist who diagnosed as PD. Second opinion Neurologist said he couldn't tell if it was PD or PSP but thought PSP. Back to first Neuro who then said Parkinson's Plus. Finally off to University hospital's top Neuro who said "Definantly PSP". We would love to know the steps/progression PSP takes and how to tell where we are in the process of the disease. We are participating in a group research project at the university (400 participants with PD or PSP and some healthy people without either). Hope we can help movement toward more knowledge of PSP and a cure.
I had seen a neurologist in 2008 & he'd told me he didnt know if I had motor neuron disease or not but he did not tell me to come back to him!? I saw a rhumatologist in 2010 refered by a orthopaedic surgeon as we were discussing possible knee replacement but I said to him I thought I should see a Rhmatologist as I had an inflammatory response to so many things. The Rhumatologist told me to keep taking fish oil + panadol osteo but said she was not a neurologist but thought I had PD & if it was it was very early thanked her & went back to neurologist repeated MRI got diagnosis PSP + in December 2010 - blew me away! Marytea13
