3X mom was misdiagnosed. Anyone else have a similar experience?

[kburgess]

After fumbling around for a diagnosis for over a year, I stumbled upon the attached article and discovered what was really happening to my mom. nytimes.com/2016/10/20/well...

[Dadshelper]

Unfortunately there are a lot of misdiagnosis when patients first start seeing a doctor. The beginnings of these diseases mimic several more well know ones, namely Parkinson's. It usually takes time for the "trademark" symptoms to appear and even then it needs to be noticed by a doctor who has knowledge of the disease.

Ron

[AllieBBird in reply to Dadshelper]

The misdiagnosis piece is really hard to swallow. My husband underwent two major spinal surgeries in an attempt to treat his rigidity. It wasn't until everything fell apart that a neurologist had palm to forehead moment. Now, we are picking up the pieces and trying to do the best we can with what we have left. This is my first day on this site, but the comments are sad but heartening.

[Hidden]

It seems to be rare that a doctor gets it right on a first visit. It took a year and a half of tests then taking all the results to another doctor for a second opinion to get an answer. Larry’s cousin had looked at neurological symptoms online and had guessed right before I saw a doctor who did.

[enjoysalud]

It happens quite often...When it happened to my son, PARKINSON'S, for three full years, I was resentful. Then with more time I have come to realize it was blissful to have had the hope that PARKINSON'S gives and not the reality of a terminal disease such as PSP.

I encourage you to watch on Youtube, Jim Bower of the Mayo clinic, MAKING A DIAGNOSIS OF PSP, CBD, OR MSA.

If you click on the circle next to my name it will lead you to my posts. Scroll down to PARKINSON'S TO PSP.....the story of my son.

Los Angeles, CA, USA

[honjen43]

I agree with others' comments.

I read the article and then the comments. For a rare disease, majority of the posts are from people who had experienced PSP in a family member. There was only 1 comment from a moniker I recognised! I feel sad that so many more are out there who do not find this site!

I too 'diagnosed' my husband online. I was not satisfied with a Parkinson's diagnosis and discovered the suite of Parkinson's+, some of which seemed to better fit his symptoms and deterioration.

Thanks for posting. Hope your mum is comfortable and you are managing with family, friends and carers.

Hugs

Jen xxx

[Hidden]

It took my mom several years & many doctors & test before she heard PSP... l still am amazed that she had the tenacity to keep searching. Personally I would have given up. These diseases are not easy to diagnose.

[Emilysmarties34]

this happened to my dad also. He was misdiagnosed about three years ago. The medication was not working at all, and thats when the parkinsons nurse suspected it was something else. So Dad went to see an neurologist specialist in london who confirmed it was PSP. It was very shocking for all of us, especially when we came to terms emotionally with the knowledge at the time that Dad had Parkinsons.