visit to optician

[marytea13]

I visited an optician last week & he has raised doubts of my diagnosis not being PSP nor parkinson's - maybe some other neuro degenerative disease but which one he couldn't say. Why I went to him is that the neuro nurses urged me to go to him. These nurses have been visiting my since 2008 after a neurologist here in Perth made the diagnosis PSP then he sent me to a neurologist colleague of his who examined me for an hour said there was something wrong but he did not know what? I find this upsetting anyone got any comments?

Strelley what do u think please? Marytea13

[easterncedar]

Oh, Marytea, I am sorry. I can imagine how it must be upsetting to have more uncertainty thrown your way, but maybe this is good news? Psp does affect people very differently, so maybe you are an outlier of some kind, and are not following the usual course. I wonder what the nurses saw that made them question the diagnosis? Our neurologist, who is a psp specialist, confirmed the original neurologist's diagnosis with an MRI. Even she at the time said generally she would only speak in probabilities in diagnosing psp, but that she was confident in my guy's case, as his condition conformed so exactly to the standard. I hope this turn of events may be a positive one for you. Good luck and a hug. Easterncedar

[NannaB]

Hi Marytea, did the optician say why he thought you didn't have PSP? My husband was diagnosed in 2010 but the neurologist has always written "Probable PSP". When I queried this I was told that positive diagnosis can only be given once the brain has been examined after death but they presume PSP because of the symptoms. Reading this site you have seen the way the illness has affected folk here, are your symptoms very different? Why not speak to your doctor about it but if you have a different neurological disease would the symptoms or outcome be very different? The best outcome would be for you not to have any neurological disease wouldn't it but the optician hasn't indicated that.

Try not to let this upset you ( easy for me to say not being in your shoes) but you have enough to cope with without extra worries. I think the important thing is that you are getting all the help you need now to alleviate symptoms with people around to help you with practical difficulties and allow you to do as much as you possibly can now.

I hope your doctor / neurologist can clarify things for you.

Best wishes.

Nanna B

[jillannf6 in reply to NannaB]

the same htign ha shappene dot me in that i have been seeing a different neuro for the last 2 visits and she think iit may not be PSP at all but ht eblod tests have come back -ve for the 3 rarer type sfo neuro disease i am accustomed 2 the PSP DXS and no longer care what name they put on it but i think having the righrt sdxs helps ......

lol jill

kit si the voice which shed hints is not a tu]pical PSP `VOICE (*OR LACK OF IT)

[NannaB in reply to jillannf6]

Well if they give it another name Jill, please don't abandon us for another site will you?

X

[jillannf6 in reply to NannaB]

no of course not nanniab

lol jjill

[abirke]

What is it they see that is not PSP oriented?

[jillannf6 in reply to abirke]

the speech mainly or lack of it

i have test ed negv for Huntingtons; a rarer neuro illness called i forget what now an a further. one called `SSCM111 I THink

LO L JILLL

[Katiebow]

Hi there Marytea13. What made him think that it wasn't PSP, is he a specialist optition who has knowledge of neurological conditions? I would think that the neurologist would be the one to listen to as being a rare condition it is doubtful any other medic would have more knowledge than him. I can only imagine that the eye movement made the optition think it was a different condition to PSP.

It must be difficult to be left in doubt as no matter what horrible symptoms PSP has at least you can put a name to it and know what to expect. Hope that you soon get things sorted. Xx

[Amilazy]

Sorry late entering debate, my thought is the optician is best at spotting very early stage PSP, slow blink rate and limited eye movement especially upwards. The diagnosis of PSP needs neurologist who has MRI scan as well as info on falls, slow speech etc. therefore I would check with neurologist but also get your GP to ask optician to put his thoughts on why not PSP in writing. Best wishes Tim

[marytea13 in reply to Amilazy]

optician did send his report to neurologist GO & Neuro nurses who had been recommending that I consult this particular Optician who has made a special study of neuro conditions. mary B

[marytea13 in reply to Amilazy]

Optician did send report to Neurologist + GP + N euro nurse thanks marytea13

[marytea13]

Thanks all who replied to my post on Optician somehow I did not get these I have now posted that he did not say I did not have PSP but that for someone 'diagnosed'. in 2008 I do not show any of the advanced signs especially in my sight. He sent his report to Rick Stell neurologist that I changed to lst year after Kermode sent me to him for reassessment. Rick examined me for one hour physically then said there was something wrong but he did not know what it was! not helpful but I realize they have great difficulty diagnosing me - the MRI-done in 2008 does show changes suggestive of PSP.

[jillannf6 in reply to marytea13]

hi nanna b =abdnall

no i shall not abadndon you 4 another site

lol jill