New to PSP or CBD ?: If you are new to PSP... - PSP Association

PSP Association

9,266 members11,356 posts

New to PSP or CBD ?

NanBabs profile image
8 Replies

If you are new to PSP/CBD or are awaiting a diagnosis, can I remind you to perhaps investigate the possibility of NPH ?

Normal Pressure Hydrocephalus (NPH) can have very similar symptoms to both PSP or CBD and, unlike them, NPH can be treatable. I personally know of someone who had very similar symptoms to my late husband (he had PSP) but was eventually diagnosed with NPH - he had treatment and recovered almost overnight. I took my husband to see a neuro-surgeon but sadly he was unable to help and soon after that PSP was confirmed.

I don`t want to give anyone false hopes, but at least try to rule out NPH before accepting PSP.

X

Written by
NanBabs profile image
NanBabs
To view profiles and participate in discussions please or .
Read more about...
8 Replies
enjoysalud profile image
enjoysalud

Good suggestion!

SewBears profile image
SewBears

Thank you for this. I’m guessing this would be detected with a CT scan or an MRI? We’ve had both. Stroke was ruled out and I don’t think that NPH was discussed. I can ask about it at our next appointment but I have a feeling this would already have been ruled out.

Thank you

NanBabs profile image
NanBabs in reply to SewBears

I am not sure, but as I understand it, scans could help with diagnosis but the NPH procedure involves drawing fluid from the spine, which in turn drains excess fluid from the brain, thereby relieving symptoms.

It`s always worth investigating - just in case you are the one it helps. I know I was desperate to find out what was wrong with P and, more importantly, if I could help or find a remedy.

x

SewBears profile image
SewBears in reply to NanBabs

Thank you. I will definitely add this to my list of questions for our next visit.

journeyofjoy profile image
journeyofjoy in reply to SewBears

My husband has NPH in addition to what is probably PSP. NPH is under-diagnosed and is treatable. Worth looking into. NanBabs is correct. They will diagnosis using MRI and also by drawing fluid from the spine. As in many brain diseases, they can't always get a 100% diagnosis. With my husband, it wasn't a 100% diagnosis but he had the brain shunt surgery anyway and it relieved NPH symptoms. Best of luck to you.

Kevin_1 profile image
Kevin_1

Nice one :)

NanBabs profile image
NanBabs in reply to Kevin_1

Thanks Kevin,

I would love to be able to help to save someone from going through what we all do with PSP.

I hope you and Liz are still battling on and keeping your spirits up.

x

rriddle profile image
rriddle

NPH should be obvious on a brain MRI.

You may also like...

NEW STUDY OF PSP AND CBD UNDERWAY

it here for all to see. There is a study of PSP and CBD underway in California. It is a study of...

Share experiences of CBD or PSP

Anyone who knows someone with CBD or PSP please get in touch. In particular someone who lives in...

Is there ever a good death with PSP or CBD?

mother is coming towards the end of the CBD path now - very thready swallow, no interest in food,...

Help identify the priority research questions for PSP & CBD

about PSP or CBD that you would like us to look into? Questions highlighted so far include can...

How Long from First Symptoms to PSP or CBD Diagnosis?

researching. E.g. for my husband it is: CBD: 3 yrs (2 yrs to \\"PSP or CBD\\", 3 yrs to...