PSP Diagnosis Changed to PD

[Granny29335]

For over a year now, two neurologists have told us they believed my husband had PSP. He has all of the symptoms. The way his eyes don't go vertically was one of the definite symptoms. He had the SYN-1 skin biopsy about six weeks ago. Yesterday, the results came back showing the protein for PD. The body-movement neurologist said he could not explain the eyes and is referring us to a neuro-ophthalmologist to see if he can figure out his eyes.

Has this happened to anyone else? I usually see it the other way around. PD was diagnosed first and then changed to PSP. He is not showing a lot of trembling; however, he says he has noticed some when he is at work.

I believe the doctor because the proteins for PD showed up, but I don't understand why they were so certain it was PSP and now it's not.

[Zerachiel]

I met s gentleman at our local Parkinson's meeting who said he was originally diagnosed with PSP but they changed it to Parkinson's. I'm afraid I never met him again so don't know any details.

[Granny29335 in reply to Zerachiel]

Thank you for replying. I appreciate it.

[Benjp]

yes my father was originally diagnosed with PSP by his GP again because of eye movements, 6 months later changed to PD by the specialist. Odd that the GP was so keen to diagnose when in truth it was not certain.

Was not aware of the Sun-1 skin biopsy but will pass onto my dad if a good measure of PD.

[Dassiasoxx]

hi - funny you should say that , my dad was originally diagnosed with PSP a little over a year ago. Recently been back to Consultant who was expecting dad to have way more problems than he has or had. Again his findings were because of the eye moments.

Consultant now thinks it may not be PSP ..has ordered dad two tests one being a Dat scan and the other an MRI currently awaiting outcome of said tests..

Guess for now it’s a waiting game x

[Granny29335 in reply to Dassiasoxx]

Although neither is a diagnosis we want to have, knowing that other people were diagnosed because of the eye movement makes me feel better about this new diagnosis. Thank you.

[Sun-flowerwearer]

Hi

There is a sub type of PSP called PSP Parkinson’s. ( PSP P ) which has a longer survival rate …typically 12 years and the disease progresses at a much slower rate. The sufferer responds in the early stages responds to Parkinson’s drugs. However they do have the eye palsy with inability to look down and other symptoms that make it PSP. It’s hard to diagnose any neurological illnesses.

[Granny29335 in reply to Sun-flowerwearer]

Oh, I hadn't heard about that. I will research that. I'm becoming so confused. For a year, we were told it was PSP, and now the change in diagnosis without any change in symptoms really put me in an unusual mood. Thank you for responding.

[Sun-flowerwearer in reply to Granny29335]

I can completely understand how unsettling and frustrating it is not knowing what it causing the symptoms your husband is experiencing for certain. PSP is a horrible disease so I’d want it to be Parkinson’s rather than PSP as Parkinson’s can be managed and survival rates are much longer. So hard but try and focus on each day now and make the most of it rather than the future.

[Granny29335 in reply to Sun-flowerwearer]

Thank you for that reminder!

[ElMarsam]

My husband was diagnosed with PSP two years ago (he had the vertical gaze palsy and the hummingbird sign on his MRI). But he has not declined as they expected, so the neurologist (top expert in PSP) began to question the diagnosis, so ordered Dat scan and the skin biopsies - both negative for Parkinson's so we are back to the PSP diagnosis.

[Granny29335]

See, that kind of thing doesn't make sense to me. The eyes and the hummingbird, but not PSP. That is why I think I'm struggling with the PD diagnosis. Thank you for responding.

[Bergenser]

I'm afraid I don't know enough about the skin biopsy test. As a constant worrier, I'm thinking it might be possible to have PSP and PD at the same time - I found only a single scientific article that appeared to consider it, so please don't take my word for it - but perhaps ask the doctors? 🌻🫂

[Granny29335 in reply to Bergenser]

I have seen several people who said they were diagnosed with both, but when I mentioned that to our neurologist, he dismissed it immediately. Do you know the title of the article you read? I'd like to read it and if I think he'd read it, share it with my doctor. Thank you for responding.

[Bergenser in reply to Granny29335]

ncbi.nlm.nih.gov/pmc/articl....

[Granny29335 in reply to Bergenser]

Thank you so much. I"m going to print this out and send it to my neurologist. I've been so uneasy about his change from PSP to PD when two neurologists had been so certain he had PSP. I really appreciate your taking the time to find this for me!

[Orangetrunk]

Dear Granny 29335,

My husband was just the opposite. He was diagnosed with Parkinson's initially. But he also had PSP symptoms. He had the biopsy and it was definitely positive for Parkinson's. However, the whole neurology department at Stanford agree that you can actually have both. He has the eye problem, the stiffness, and the fixed eyes and his falls tend to be backward not forward. He only had a mild tremor and that seems to be gone most of the time because of the Leva-Dopa. Basically, we just accept that it's both and go from there. At this point, he can walk, eat, bathe and handle quite a lot on his own. But we are prepared to expect more issues. So, hang in there and know there are are a lot of people out there with what is often referred to as Parkinson's Plus. My heart is with you.

[Granny29335]

I mentioned that to my neurologist who immediately said you can't have both. Do you have the documentation from Stanford that I can read and share with him. I just don't have a good feeling that it is only PD based on his eyes. Thank you very much!