PSP Association

My life for the past several months which helps explain my silence I hope; this is a copy of a reply message I sent to Eastender:) Crazy!!

Thanks for your concern and know I'm touched you keep reaching out to me. I decided to wait to respond to you after I got some med test results back, but now I'll try to be brief (right!) and up-date you.

First, tho, know my daughters' are doing excellently! More details in another email.

I, however, have been a medical mess; some things possibly related to PSP, others totally separate. I turn 57 on Saturday and have had ENOUGH of this stuff!

Believe I left of with my ongoing problems with palmar/plantar pustular psoriasis. Started a year ago this month. Thought psoriasis was scaly skin. This form is way more than that; very painful sores on bottoms of feet, palms of hands, and some fingers. Went thru light/laser therapy twice a week January thru March. Did seem to help some. Still have outbreaks that are quite unpleasant but don't have as many sores/peeling skin with each event.

Because it was so out-of-control, my Internist started me on Prednisone at 50mg/day and I finally weaned off it early June. Rough ride with that stuff. Glad that's over.

Beginning last September, my liver enzymes went sky-high for reasons still unknown. All my meds were closely looked at and ruled-out. A liver ultrasound was normal, thankfully. With repeated testing, they were almost normal in March, but starting in May, including blood work just done last week, are high again.

Beginning last July, I've been running a low-grade to mild fever - every day. Seriously. It was assumed it was because of my psoriasis but my Internist is finally concerned. Blood work is showing my white count is 13, about 2 points higher than normal. She also just diagnosed me with something called leukocytosis. It's arrived at by combining 4 blood tests and hasn't clearly described what it is other than it has something to do with a high white blood count.

I was having lower back pain from Xmas and finally went to see my Internist in March. Yea, took me awhile. Didn't want to over react but it was very unusual (and painful) cause I don't have lower back pain. Plus, didn't want to find out I had yet another problem. Turns out I had a muscle low in my back that was "hard as stone". Also did an X-ray. Found out I have moderate osteoarthritis in L1-L2. Turns out if you have arthritis in that area, it can cause hip pain. Go figure. My left hip has grade 4 arthritis, bone on bone with nerve impingement already. Thanks for that, huh?

Begging late March, with even a little exertion, I would lose my breath to the point of panting and my hair soaking wet for up to 45 minutes, 2 to 3 times a day. Scared me a lot. Was also exhausted. Saw my internist in very early May about that. During the exam, she was doing the standard pressing around your belly and it hurt like heck. I use a Fentanyl patch for pain, so I didn't feel pain until that exam.

Had a CT-scan of my abdomen with contrast a few days later. Everything was fine BUT my bladder of all things. Huh? It showed thickening of my bladder walls. Said she wanted to "watch it closely" and had a repeat ultrasound of my bladder on July 3rd which showed the same thing. Her concern was cancer, or a precancerous condition. Got to sit with that over my head for 2 months. No urine infections for decades. But, for reasons no one can explain, my bladder habits did a polar opposite over the winter to present. Prior to that, I was hopping from one foot to the other feeling the urge to go. Had to plan errands around bathrooms. But it simply stopped. Very unusual combined with the abnormal findings; worried me (am only going a few times a day). Finally saw a urologist yesterday. To my great relief, I'm okay in that regard. Can't explain the thickening or lack of urge to go. The thickening is uniform and didn't look cancerous at all. Urine test was clean. Had to do a pelvic, tho, and said the muscles of my pelvic floor as well as the bladder are rock hard. He did say all of this could be PSP related but really wasn't sure.

Because of my sweating and shortness of breath, my Internist sent me for nuclear imaging and a stress test just to see if I was getting enough blood flow thru my heart. I was exhausted just getting ready and when I got there, the nurse took my pulse and said loudly "Tachycardia here!". Huh? My pulse was 133. Suddenly I had 4 people on me including a cardiologist. Had to do multiple tests to determine if it was safe to go forward.

This, again, is very abnormal for me. All of my life, I've consistently had average-to-low blood pressure and pulse, up to and including the early May visit with my internist. They had to go back in their records to get a 'high' pulse on me and it was :) The running joke has been most my adults my age would kill for my BP and heart rate.

After that early May visit, however, because of the symptoms I was having, I invested in a top-of-the-line BP home kit with an automatic cuff and records your pulse. Tested myself randomly, and each time, 4 in a row to make sure it was consistent. My pulse was consistently running 120-150. Sometimes at rest it would come down to 110 but I thought all of this was a mistake and I wasn't doing it right.

Well, it was and still is right. I've been in sinus tach since at least early June. Subsequent doctor visits have confirmed it as well as home testing. The results of that cardiac imaging and stress test "for profusion only" was 'normal'. Couldn't believe it. I asked them since my heart was beating so fast, wouldn't I feel more energized versus dogged-tired and sleepy. They said no; with my fast heart rate, my body has felt like it's already worked out and I should be tired. I was there for 4 hours and slept between testing.

Because of my arthritis, they didn't put me on the treadmill; injected me with something to make my heart speed up. I immediately felt dizzy, then chest pain-real chest pain-smack in the center, then felt sick to my stomach, then my ears were pounding, and my heart rate didn't go higher than 128. It was awful. Had to give me 2 doses of the "antecdote" to reverse the symptoms. When I followed up with my Internist, I asked how could that have possibly been 'normal'?

So, all things considered, I really have her attention now.

During June, she also had me see a rheumatologist because I have had a small handful of auto-immune diseases over my life-time, including this bad case of psorais, which by the way, I've been told I'm stuck with; treatable, not cureable.

She also said she considered me 'immune-suppressed'. The Rheumotologist said the opposite; considers me to have an over-active immune system. Also diagnosed me with plantar fasciitis on my right foot which the bone spurs in my heel were confirmed via hand/foot x-rays. Luckily, no psoratic arthritis which she said wouldn't be able to treat because the meds would only increase my liver enzymes.....yiyiyiyi. The Rheumo also ordered a bone scan. My follow-up with her is tomorrow.

This afternoon, I'm getting a holter monitor put on for the next 48 hours - comes off Thurs. My Internist wants to get details on my sinus tachycardia. Her concern is that I might be occasionally slipping into a dangerous rythme such as V-Fib or A-Fib. And wants to know how it fluctuates during sleep. I told her I've always been a very vivid dreamer since a small child and they are like great adventures. I get very physical in my dreams, all my senses kick in, I can manipulate them, and they seem to go on forever. Told her I wake up exhausted often just from my dream activity (best part of my day tho).

I'm having an echocardiogram of my heart Thursday morning. Yes, the can do this with a holter monitor on. This test will show if I have blockages, disease, valve problems. Etc. Which could explain some symptoms. But she said, sinus tach is usually, but not always, a response to something else going on in your body and/or stress. Told her if anything, my stress level has finally improved. So now she's all over this; need to find out why I've been running these fevers for a year (duh!), why my liver is funky, why my blood count is now consistently high, and why I have tachycardia (did hint that might be PSP related).

So after the Echo Thursday morning, then the holter off in the afternoon, I'm having a lung CT scan. Have had a chronic cough for a year that's been ignored (tho a recent chest x-ray was normal) but she's concerned I might have a small clot which could be causing the fevers, tach, and breathing problems. Whew.

Finally, to add insult to injury....not kidding...this is unreal...I had an eye exam early June because I feel like my vision is worsening, which it shouldn't be. During the summer of 2011, I had cataract surgeries in both eyes-long story. Corrective lenses are put it in and he improved my vision substantially. Got my vision to 100/20 in both eyes. Said the lenses would never need to be replaced nor would my vision worsen. The strength of the lens stays the same.

After I made the appointment but before I saw her, I was exerting myself in the yard, sweating and panting like crazy, but being stubborn and not stopping. I wore a bandana around my forehead and the bangs of my hair over the bandana. Got a bug on bangs that kept sweeping across my vision in my right eye. Couldn't swipe it away; it got me in the house in front of a mirror. No bug. But a sudden J-shaped large black spot in and around my field of vision (still have it).

Just to trump myself, also developed a large sty on my upper eye-lid. Have never had one. Hurt like heck and caused my eye to swell shut. Also looked like I go socked in the eye. eye exam wasn't normal. My vision has worsened quite a bit for which she had no explanation. She called the "J" in my eye a 'vitreous detachment' probably caused by exertion. Involves the retna. It's basically a very large floater. I'm stuck with it. The sty has finally healed up over the last few weeks. However, the pressure in both of my eyes was high. Yup. She said it's an entirely separate problem and unrelated to tachycardia, the "J", or the sty. So this afternoon, after I get the holter monitor on, I am having a 'field vision' test because she suspects glaucoma.

And I'm still standing. Ha! Think I'm still alive just to spite death:)

So, I hope this explains my silence on this site. Just frankly overwhelmed, in pain, and sick since the first of the year with all of this stuff...damned tired of it, too.

I'll let you know how things turn out. Please feel free to share this with anyone else who's expressed concern. I could not possibly recreate this email....



8 Replies

Sorry, EasternCEDAR for short-changing you on your name. I'm an original "Eastender" from St. Paul, MN...combined us somehow...oops.


I was thinking of the British show, no worries. it IS good to hear from you after all this time, Judy, although what you are managing to deal with makes it utterly impossible for me to complain about anything. They make them tough in Minnesota, that's for sure! Thanks for writing. Let's keep in touch! Love, Easterncedar


Hi Judy, that is some post. Forgive my ignorance, but didn't understand a lot! Sounds all far too much for someone with PSP, to have to cope with. Oh boy, were you a naughty girl in a previous life!!!

All I can say, it's great to hear from you again. Glad you are still upright.

Sending you lots of love



Wow so when somebody asks you how youre doin.....they better sit down eh?


Well this is my 2d post to you..... I need to go to bed as it is my 4th post to only two ppl. Thsu I will shorten up what I said with this:

First, tell your eye doctor about PSP print them off an info sheet about eye symptoms.

I know we were concerned, went to t he optomotrist who said all was fine, and within in a month B was unable to see the floor infront of him. B also said he felt like he could see only peripherally. No downward gaze. He cannot focus on the person talking to him.

Do yoga and or Tai Chi for your tach and arthritis

for your psoriasis, and all other goodies use acupuncture

and what the heck find you a nutritionalist who may have some good nutrition ideas a s well as supplement to help remedy some of these things. Your body is wearing itself down trying to keep it healthy. Many things that can help you are not going to be found in the western medical field . And while youre working on your body , do not forget about your spirit. I too needs to be fed. Pray, find healing through faith . Don't give up on joy (though you sound like you have a pretty good attitude with it all)

NannaB said make time to do and go the places you want. this is true .

There will be a post party, I think on the 16th dont know what this entails but Jillanf does.

So come back on th e16th and say hi., and until then keep a stiff upper lip, smile , breath, and keep on


1 like

"I too needs tob fed " should read, "It too needs to be fed" sorry for the confusion...



Can't believe one person can suffer what seems every symptom out there. I hope that they can sort out at least some of the symptoms and life becomes a bit more bearable. Xxx


Wow you don't have an easy path to follow. Agree with Abirke, only thing I can add is the eye thing, M was thought to have cataracts but it was before PSP diagnosis and as soon as they knew about it they reassessed her and no cataracts. But with your luck anything that can go wrong seems to. So all I can do is wish you well. Keep fighting it. Tim


Oh Judy, I'm so sorry you have had all this to put up with all this. My husband is still being weaned off Prednisolone which he has been on since Christmas and I've seen how they have affected him. I hope you will soon feel better and pain free.

Sending you a big hug.



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