Sudden Decline

[Mybeautifulfriend]

My friend, who is yet to be diagnosed "officially", has suddenly said she feels "miserable". She is still positive and upbeat - so her saying this means she absolutely must have hit a new low in her life. She had extremely irritated and runny eyes this week, fallen several times, woozy feeling, light sensitivity, and more. She does not feel able to get out of bed but is still mobile.... if this is PSP is there anyway to know how long she has had it with these many symptoms? What can I do for her? Should she go back to neurologist??

[Dickwin]

I am so sorry your friend is hoing thtough this. She sounds like she is fairly fsr along in the process. But the disease is hard to diagnose. My wife is in a similar state and phase. She was diagnosed two years ago but her onset was 4 to 5 years ago and she had a Parkinson's diagnosis for almost 2 years prior to her "upgrade" to PSP.

Also, the disease progresses differently in each patient, and I am no Dr. So take what I say with a grain of salt. Is her neuro a movement disorder specialist? If not, I would consider consulting a neuro who is. It is a rare disease and manifests itself in similar ways to at least a dozen other neuro disorders.

This site is a godsend. People on here collectively have more knowledge about this disease than most doctors. Stay with us. You will need the support you find here. Good luck.

[Dadshelper]

I'd have her doctor check for an eye infection, if there is none then she probably has extreme dry eye condition from not blinking as much. Watery eyes will also cause light sensitivity. It's really hard to answer how long she has had anything from those symptoms. If the Dx comes back PSP or one of the related diseases it will still be hard to pin point how long she has had it. Every patient progresses differently, not all will exhibit the same symptoms at the same time or even have the same symptoms. I do agree with Dickwin that a neurologist movement specialist would be her best choice for a doctor.

Ron

[KERRINGTON]

Tell your friend to read, read, read this site, AND learn about B 1 FOR BALANCE.

[SewBears in reply to KERRINGTON]

I asked our doctor about B1 and he said a Complex B vitamin is best because it not only has B1 for brain health but B12 for blood and a lot of other benefits. He also mentioned that you cannot OD on B vitamins. It’s not harmful and he encouraged it.

[KERRINGTON in reply to SewBears]

Agree, I also take a b complex in order to keep things balanced.

[SewBears]

I hope that your friend feels better today. Yes, please take her to see the neurologist as soon as possible. When you make the appointment mention all of the symptoms. Especially the wooziness. They need to rule out a stroke, ear infection, etc.

As for length of time that she’s had it... probably before the first symptoms started to be noticed.

Please let us know what you find out.

Sending hugs from I SewBears

[LuisRodicioRodicio]

Hi Mybeautifulfriend!

I am sorry, perhaps PSP or a neurological disease has entered your friend.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

By private mail I´ll send you our particular experiences on PSP-RS that we hope you can find useful.

I am not a phisicyan. The information I am sending you through private mail is a compilation of our own experiences and of the people who participate in the PSP chat. The information is made with good will and with the best technical criteria that I could contribute, thinking above all in the guidance and support of the caregivers that, with the exception of the help found in the websites and chats of PSP associations, should be face alone this unknown disease.

Hug and luck.

Luis