Recently diagnosed

[Barbara-41]

I recently received a PSP diagnosis from an ophthalmologist mainly based on the inability of my eyes to look up. I'm waiting for an appointment with a specialist in a movement disorder department of a major hospital who can confirm or reject the diagnosis. I've read that many people get various diagnoses before their PSP diagnosis. Anyone know of someone getting a PSP diagnosis which is changed to something else? I'd be most interested in hearing about people's symptoms and medical journey before and during diagnosis.

[Fer39wer47da]

Hi there, Welcome to this forum of wonderful people who are Carers or indeed patients themselves.

I was initually diagnosed as a parkinson's patiënt, but during the course of the past 5 years, My neurologist changed his idea and said that I woud most probably have PSP, due to very frequent falls, and Also because of the Inability to look up with my eyes.

My eyeslids trend to close most of the time, but now i've had surgery (ptosias) and it is major difference. They have just shortened the muscles of my eyelid, such an incredible fast operation under local anaestaetic , I think it took them only 20 minutes in all!

This friday I'm going in for my other eye, they never do two eyes at the same time of course.

If you have any questions,don't hesitate to ask them!

By the way ,I live in france, but I suppose they do this type of operation in most countries. Good luck to you and let us know what the verdict of the neurologist is.

Bisous, Anne baer

[Barbara-41 in reply to Fer39wer47da]

Thank you for responding.

I fall quite often, only a few backward. I also have chronic widespread pain in joints and muscles, blurred or double vision when I'm reading, photophobia, chronic migraine, GERD, Barrett's esophagus, Sjogren's, EDS-3. episodes of monocular blindness, and can't stand or walk for more than a few minutes. I've read lists of PSP symptoms but don't know which of my list could be part of PSP. I Had an MG diagnosis for a few years before the doctor decided I did not have it.

I'm glad to hear about a simple eyelid surgery. One of my upper eyelids droops. When I asked my ophthalmologist whether anything simple could be done about it he said it wasn't that bad. I have problems with all levels of anesthesia. Locals dissipate very quickly and I need repeated injections which cause problems where they migrate to. I've desaturated during one conscious anesthesia and another started the muscle problems that never went away. Under general anesthesia for sinus and septum surgery my heartrate dropped to 15bpm,Under sedation for major surgery, I remained conscious, but paralysed and pain-free. I guess I shouldn't have surgeries that aren't absolutely necessary.

I will let you know what verdict is.

I live in a suburb of Boston, Massachusetts, U.S.

[shasha in reply to Fer39wer47da]

HELLO - WHERE IN FRANCE ARE YOU - WE JUST MOVED BACK AFTER 8 AND A HALF YEARS IN FRANCE -- WE WERE CLOSE TO LIMOGES MY DAUGHTER AND FIANCE AND SON ARE STILL THERE AND I MISS THEM ALL DREADFULLY XX

[ketchupman]

My wife's diagnosis was initially Parkinson's, but after about a year, she saw a different movement specialist who determined it was PSP, primarily because of the eyes not being capable of moving up and down correctly. But she was also having a lot of backward falls. Could only keep one eye open at a time. Her speech was getting much softer. She was becoming more impulsive. And was having some slight cognitive issues. A couple years into it her bladder became a real problem and she could not control her urine. As things progressed, we ultimately had a PEG inserted, which gave her 2 more years of life. Good life, not great. She ultimately succumbed to aspiration pneumonia 11 months ago. She probably had PSP somewhere between 8-10 years.

Ketchupman

[Heady in reply to ketchupman]

Hi Ketchupman, how you doing? I see the dreaded first anniversary is coming up. I am suffering from the six month one at the moment. Up one minute,being very positive, just booked a holiday to go away for a week on a river cruise in France, by myself! Next minute, I need to be locked in a darkened room and allowed to scream for several days. When will this evil disease ever let go of us?Hasn't it had enough fun at ours and our loved ones expense?

Know I thinking of you.

Sending big hugs

Lots of love

Anne

[ketchupman in reply to Heady]

Hi Heady! Good to hear from you. Yes, I dread the one year anniversary. There have been so many of those special occasions already that have been so difficult. Our 36th wedding anniversary was on June 6th, which was particularly difficult. I have good days and bad days. But I'm trying to stay positive and move on in life. I know Kim would of wanted me to. So I've put my condo here in Louisville up for sale and also our lakehouse that's about 2 hours away. Will probably buy something down on the beach in Florida and live there most of the time. But I'll still be up here in Kentucky and will stay with my dad some, as he's about to turn 84 and will be needing more attention. Hope you enjoy that river cruise!!!! Kim and I used to love cruising. We did 18 of them, but none of them were river cruises. They were all on the great big ships. You take care of you!

Love, DAN

[Heady in reply to ketchupman]

Thanks Dan, I will do. You take care as well.

Lots of love

Anne

[JA10]

My Mum was diagnosed pretty quickly with PSP as her first obvious symptom was falling over backwards. Luckily we live near Addenbrooks hospital in Cambridge (UK), and they have some of the leading specialists so no miss diagnosis. Initially her lack of eye movement was minimal but enough for a diagnosis. Her eye movement is a lot more restricted now, but eyelids so far are ok. Because her falls were so bad and she kept breaking bones, she is now in a wheelchair rather than stand and fall. ( My father has MS and is also in a wheelchair, so can't help with standing etc). Prior to PSP diagnosis mum has had ulcerative colitis for many years but is receiving Infliximab infusions for that which seem to be helping with that lots.

I hope you manage to find all the assistance you need with managing your PSP.

[scribefish]

My mother was initially diagnosed with "Wait and See" which is neurological speak for I have no idea. After two years, I approached the doctor with the idea of atypical Parkinson, which he immediately rejected and eventually suggested was CDB (CBS, CBGD) although no formal diagnosis has ever been made. 4.5 years is a long time to wait and see by the way!

Momma has what we call "SLIPS" which I would describe as stair step symptoms. One day she will randomly wake up and have just lost an ability. Once it was the ability to walk, another slip she began to slur her words, and another she began dropping items. The last one, three weeks ago, she began to have emotion outburst and even more memory loss. After each "slip" her condition seems to stabilize and we create what we call the new normal. during this time we all adjust to learning to work around the new disability and keep up her quality of life. Unfortunately Once an ability is gone, it does not return.

Her symptoms began with losing her balance and randomly falling about 5 years ago. As more time passed, the falls became more frequent. The original prescription for her wheelchair was because of a mild stress fracture in her foot due to a fall but she had a slip of major muscle control loss. Despite physical therapy, and strenuous effort she never regained walking. She has been in the chair for 2 years.

She began suffering Nephropathy in her legs as well as complaining that her feet were always cold and swollen about a year ago. Momma also suffers from COPD and unfortunately has not been able to lay flat for about six or so due to airway obstruction. She sleeps in a recliner because it is the most comfortable for her, She rejected the hospital bed the day I got it because it put pressure on her hips. (She has had arthritis for years.)

Her words began to slur about 18 months ago and the extreme memory loss and confusion has been going on about three months or so. She has always had mild tremors in her hand yet was still an amazing artist. She lost the ability to paint about 4 months ago. Fatigue started about two-three weeks ago. She is asleep more than awake lately. This week we have began seeing the beginnings of shearing (friction bed sores.)

She has shown no signs of having double vision and has not had trouble with her eyes thankfully. Currently she is watching old movies on Youtube and happily chewing on a strawberry pop tart.

[Barbara-41 in reply to scribefish]

I've had years of decreasing walking ability and ability to hold on to things, increasing pain and eye problems including double vision. My eyes have gone from pain moving them in any direction to decreasing time to work together so that I have to close one eye to focus. I've gone from blurring to double vision focusing. The inability to look up is new. I know I don't look down because I keep tripping over things I don't see. Falling is increasing, falling backwards is new. Sometimes I freeze when walking, just can't take another step. Once I was behind a parked car, a blizzard had started and heavy snow covered the rear window of the car. The car's motor started and I knew the driver couldn't see me behind the car but I still couldn't move. My husband came back to see why I hadn't reached our car before the car I was behind started up. Between falling, freezing and severe pain when I'm on my feet for more than a few minutes, I can't shop and can't go anywhere alone. I still drive to local doctor's appointments but except for ones that have a very short distance between handicapped parking and the elevators and offices I have to call ahead to ask for wheelchair and escort availability. Another problem is that I'm afraid to step down off a curb when there's nothing to hold onto.

I worry about needing a wheelchair. I don't want to move. We have a lakefront home with beautiful views and I love swimming and gardening. Our house is two stairways down from street level and there are two more stairways down to the lake. My gardens are terraced into many more levels. The house itself wouldn't accommodate a wheelchair even on the main floor and the doorways and hallways can't be widened without gutting the whole floor, moving the plumbing, losing cabinets and closets and the study. Because of the lake the footprint of the house can't be changed and it takes years to get permission to do anything. When my arms were strong enough for a walker I couldn't get through doorways with it!

[Christine47]

My husband was initially diagnosed with disease of the basal ganglia in 12/12. The neurologist confirmed PSP. He probably showed his first symptoms ("explained falls/loss of balance) in 2008 or 2009. Your eye symptoms sound like his, which he started to complain about about a year ago. He gets himself around in a wheelchair, but when we go out he walks assisted. It is a crazy disease.

[Barbara-41 in reply to Christine47]

Thanks Christine47. My Primary Care doctor has told the movement disorders neurologist about me but I still don't have an appointment.

Tomorrow I get a probably unrelated problem checked out. In March I woke up twice temporarily blind in one eye. In the emergency room they did a chest X-ray and discovered a scar next to a patchy area. Tomorrow I get a chest X-ray to compare with that one. I've read about people with PSP aspirating food and getting pneumonia. I've just started having occasional problems swallowing pills and a few times food, but I don't remember that happening before the March X-ray.

[Christine47 in reply to Barbara-41]

Yesterday I was reading about Neuromyelitis optica and the aquaporin 4 antigen thinking there might be a connection with PSP and my husband's eye issues. You might want to ask your doctor about it.

[Barbara-41]

To Christine47,

I just somehow lost the start of a response.

Thanks for the suggestion.

Yesterday I had a mammogram, a bone density test and a follow-up chest X-ray. Only the mammogram report is back. They found a mass and said I need a repeat mammogram and an ultrasound. I hope the other two reports are better.

[Suelp]

No,I haven 't heard of anyone getting a PSP DX and then getting another one.

[Barbara-41 in reply to Suelp]

My primary care doctor feels my symptoms don't fit PSP. My ophthalmologist who had said he thought my vision problems were caused by my brain, not my eyes, thinks I should ignore the PSP diagnosis of the ophthalmologist he sent me too. He now says my eye problems are due to aging. I have all of the PSP early symptoms and a few of the later ones as well as some that don't fit, but people can have more than one condition. I insisted on seeing a specialist in PSP. My appointment is September 14.