PSP Story With A Touch Of Humor #2

I started feeling icky late last week. I looked in the mirror Fri. morning & knew it was time to go to Urgent Care.

The nurse came in to take my history. PSP was at the top of my list. No surprise, but she had no clue as to what it is. In came the Doc who also had no clue what PSP is, tho I did my best to explain it. His reaction was disinterested.

He took one look in my mouth and said "You have a severe case of thrush.". Nurse took several blood samples & off she went.

A short while later, back came the Doc with my chart & closed the door behind him, looking way too serious. He sat on his stool & scooted over to my bed. I thought, "now what?"

He explained all of my blood work was normal. That should be a good thing, right? Not according to Dr. Doom.

He went on to say Diabetes is a well known cause for thrush but since that was normal too, it left him with only one possible/probable diagnosis....HIV or AIDS.

WHAT???!!!!!!!

It was the last thing I expected to hear him say. I kept thinking "he admits he knows nothing about PSP but his theory is HIV or AIDS?". What the...? I believe my chances of having either are slim-to-none. I started feeling a giggle-fit coming on that I had to suppress because it felt both surreal & ridiculous.

He then proceeded to ask me a series of very personal ?'s about my sex life thru the ages to the present, which sounded even more ridiculous & surreal. I did answer him but had the overwhelming feeling I was going to burst into giggles. Decided the only thing I could do was get out of there ASAP.

I let him take the blood test for it; the results will be sent to my Internist & I'm too follow-up with her. He also gave me an RX for something that started with "Fluc..". You take it once; that's it.

On my way home, I laughed til I cried. I think I needed it. When I got home, I used several different search engines for PSP + thrush. Got hits on all of them. Came to this site and looked for a tag for thrush; sure enough, it was there.

I haven't taken antibiotics or steroids which are usual triggers for thrush. One of the other causes noted was a suppressed immune system. No doubt I've got a case of that going on:) Move in Oct. to a one level home, still bring stuff over from the previous house, in charge of renovations to sell the previous house tho I'm delegating everything I can.

And then there's adjusting to my new 'normal' with PSP. Yup, just a little off the stress-meter, which will lower your immune system in a hurry. I've had 2 other minor events of thrush since October, didn't know what it was & went away quickly. Have also noticed for the past few months I'm doing more sleeping on my back with my mouth open, making it extremely dry. It's woken me up several times during the night. This is new; have always been a side-sleeper.

So what are we going to do with these danged Doctors who don't know what PSP is, won't take a few minutes to at least Google it, and come back at you with a whackadoo theory for a diagnosis?????? Good Grief.

20 Replies

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  • hi judy

    believe it or nto i ahve ha dmk 1st botu o fthrush for abotu 40 yrs

    and i have taken 1 of the fluconazole pills which ha shelped a lot

    i think the doctors lik eot htink thyey knwo it all when in facat theyh cannot

    do yhou have to seee htis d ragaign or cna you go to a different one

    makes sense and GET SOEM OF THE PSP CARDS TO HAND OUT

    THEY R GOOD

    ;LOL JILL

    :-)

  • Hi Jill,

    I've heard about these cards, where can we get them from? Bob has a computer print out he carries around to show people, it's getting worn a little thin, cards would be great!

    thanks, joan

  • WHERE DO YOU GET THESE CARDS JILL - I HAVE LOOKED AT THE PSP SITE BUT COULD NOT FIND THEM

    LOVE SHA X

  • I know it's a challenge for you to type, but are saying you've had your 1st bout of thrush in 40 years? The drug he gave me is fluconazole as you stated (you typed that well!).

    My tongue at least feels a bit better but the back of my throat as far as I can see is still covered in thrush. Just wondering, because I've had about 4 recent aspiration events with clear liquids, if it might something to do with this. Too much moisture in too many places. Thrush is yeast; thinks there's a correlation to dampness. Might be wrong. The center of my just feels icky. Read somewhere thrush can spread to your espoghogus (sp?).

    So, guess it's a good thing I'm going in for a follow-up with my Internist this upcoming week since there is still so much of it toward the back of throat. I will then receive my negative HIV/AIDS results as well:)

    To be absolutely CLEAR, any references I'm made to HIV/AIDS in this post are not from a place of intolerance, bias, or cruelty. At all. I pass no judgment.

    What I was emphasizing was the absurdity of that Doc not knowing or wanting to know what PSP was to a, his words, "possible or probable" diagnosis of HIV/AIDS. If I hadn't been down this road before dealing with medical professionals about my own health problems, dealing with medical professionals about my girls' rare genetic disorder & getting that kind of reaction so many times, what he said might've put me in a total frenzy, panicked & scared.

    And, yes, I AM getting the cards. They have to help either a little or a lot, because after this experience, my word isn't good enough even to prompt this doctor to dig just to see there's a connection, rather than tell me this completely out-of-the-blue theory. Wow.

  • That's awesome Judy! I needed a chuckle! Bob's new GP didn't know either and he's really on top of things. He googled PSP while we sat there, but he wasn't shocked when he didn't get anymore than news about playstation! Bob's doc quit practicing in the midst of seeking a diagnosis, fortunately my GP took him on and quickly learned about PSP. But you're right, these medical people don't want to step outside the box!!

  • That's absurd! Thanks for the chuckle back. He actually googled it while you were sitting there & got news about playstation?? I believe you; you couldn't possibly make that up. Then he quits mid-stream to boot. Thank God your GP took him on as a patined and got educated about PSP.

    By medical professionals not willing to step outside the box sure can put you in a box like the one I found myself in on Friday. Disregards the PSP he knows nothing about & comes back with a life altering "possible, even probable" diagnosis of HIV and/or AIDS?? I'm pretty shock-proof, but sure didn't see that one coming.

    I'm no shrinking violet but the lesson I took from that experience is I need to be an even stronger advocate for myself. Do you off-hand know if there is a business out there that makes PSP Medical Alert bracelets or neck chains with a tag?

    Judy Johnson

  • Hi Judy,

    I commend your self-control! How you managed to stop from laughing until you got in the car I shall never know. It may be small if me but I would want to go back to that doctor with the negative results and ask him what he thinks now!

    H

  • Oh, you have no idea how hard it was to maintain my composure; seriously:) At one point my shoulders were shaking pretty hard because I was laughing on the inside and trying to stay quiet on the outside.

    And because of that, I also had a constant stream of tears coming out of both eyes and the became reddened. So to top-it-off, he diagnosed me with Pink Eye in both eyes & gave me an RX for antibiotic eyedrops#@!@@#!#!!!!

    Can you believe it? I sure didn't; the whole thing was so surreal and he was SO serious about all he was saying.

    You gave me a great idea tho...I requested & received a large envelope of info from CURE PSP out of Maryland, USA. When I see my Internist to get what will surely by my negative HIV/Aids test results, I do believe I shall take the time to put a short letter together to him, with a copy of that result, as well as copies of info from CURE PSP.

    And hand deliver it, hoping he's on staff that day. One of the things we should be doing is raising awareness, right? Well, that Doc certainly needs to become aware & enlightened, as well as learn to not be so quickly dismissive of something (quite serious) he's never heard of before. Particularly if the alternative is to gob-smack a patient with something as signifcant as a "possible or probable" diagnosis of that degree.

    Yes, indeed, this is what I must do. Enlighten a medical professional one at a time (or any one else for that matter); if it can't get past the ego and lands in a wastebasket, at least I tried. On the other hand, there must be those out there who would appreciate it:)

  • Please do report back should you see him again. ;-)

  • Will do.

  • hi joan judy and al

    th ePSP cards can be obtained free from the PSP ASSOC IN THE UK

    LOL JILL

    :-)

  • YES BUT WHERE ION THE SITE DO YOU CLICK ?

  • Judy - I googled PSP specialists St. Paul Mn and got several sites. We use Noran Clinic in Mpls. for my husband who has had a stroke. I have spoken to them about my mothers PSP. I think the key is to find a neurologist that has the expertise to deal with PSP so your appts are more productive rather than spending your time educating the doctor. I have found that a neurologist can do orders that a GP is hesitant to make. You are doing a great job advocating for yourself. Find a physician that can make that task easier for you.

  • Thanks for your reply; you make total sense.

    I have great confidence with my Neuro for many reasons; he has me on a short-leash, seeing me every 6 weeks. Last saw him 1-30. I asked him during that visit since I see more of him than any of my other docs, should I also see him about more common, non-PSP, stuff. He said no, got to your primary care Doc. My primary care doc, an internest, is wonderful; been working with her for years; another Doc I have great confidence in.

    Friday morning, when I saw the awful mess in my mouth, I did try to get an appointment with her 1st, emphasizing how whatever it was, had invaded my whole mouth & was quite painful. It did no good; she's a Doctor in demand & her first appointment isn't until next week. They offered to set me up with someone else, but I declined, fearing I'd have to 'reinvent the whole wheel' again with someone new. In hindsight, should've taken that chance. Because that's excactly what I did anyway at the Urgent Care Clinic.

    So that's where I went; have been there before. It's called the "Urgency Room" in Woodbury. Also, I didn't think I needed an ER but knew I needed it attended to that day.

    I somewhat expected a doc there not knowing what PSP was; migh've been in the same circumstance in an ER for that matter. If I was able to see my Internist the day, based on my history with her, if she didn't know what it was, would've taken whatever time was needed to get a good sense of it & that thrush is not unexpected with PSP. I do have an appointment with her 3-6 to bring her up to date as well as get my 'negative' HIV/AIDS result:) The med he gave me that you take once barely touched the thrush, so unless it gets better on it's own, really need to see her; feels worse at the back of my throat & down the pipe/pipes beyond what I can see.

    I was just so blind-sided by the urgent care Doc's possible/probable diagnosis, words can't describe it.

    Thank you for taking the time to google PSP specialists in the St. Paul area; that extra effort warms my heart. Thanks as well for replying.

    Take good care of yourself, too.

  • A side story unrelated to PSP, but you'll ge the point/points.

    During 9-10, my Internist found a large cyst in one of my breasts. You know, the kind you're told "is just a harmless, fluid-filled cyst" & "millions of women get them every year", blah, blah, blah. But to be sure; she ordered a mammogram + ultrasound (oh; I was not a good self-checker, but I am now).

    Took a week to get those tests done from the time my Internist put the order in. When the tech was doing the ultrasound, I was watching the screen, & immediately knew what I was seeing wasn't right; I've had 'harmless cysts' in the past that have been ultrasounded but what I was seeing on the screen was alarming; absolutely not right.

    This cyst, & it was a cyst, contained 2, large, solid items w/irregular borders, etc. I though "uh, oh". Took a long time for the tech to come back to the room with the Radiologist. He was an older gentleman.

    His demeanor was almost animated & seemed oddly excited; at least that was my perception. Went on to tell me he was very sure I had a very rare form of breast cancer in which the tumors grew within the cyst. He went on to say a Doctor may only see one case of this once in his/her career. In fact, he had a patient with this rare form of breast cancer during January for the 1st time & had consulted with a top Breast Cancer Research Center to be sure he was correct in his diagnosis. He went on to say "but to get 2, and in the same year, would be hard to statistically measure. So glad I could make his career that day because of MY predicament.

    He also kept referring to his tech who also worked with him on the 1st patient, for validation. The tech said it looked exactly the same, blah, blah, blah. He said it needed to come out immediately so I could "begin treatment".

    And then it happened. I got the giggles which evolved into a hysterical laughing fit. I kept thinking "...my kids have a very rare genetic disorder and now I have this very rare breast cancer? My gene pool sucks." Just struck me as a rather perverse irony.

    They both stood there staring at me not sure what to do. I regained my composure, eventually. He called my Internist who wanted me to see a specific surgeon. Made that appt. before I left.

    So the 1st week I saw my Internist who disovered the cyst; 2nd week was this diagnostic testing & getting gob smacked with the "very rare breast cancer" diagnosis, so much so, a Doc might only see it once in their career.

    So week 3 was seeing the surgeon. Chatted about this, chatted about that. Then she announced that particular day was her last, because she was going on a 2 week vacation....grrrrrr...my anxiety was escalating as it was, but to wait another 2 weeks? C'mon!

    So I had several weeks to sit and think, to sit and brood, to sit and 'what if' myself to death because this was presented as a certainty. Would go between fighting it no matter what it took, to having me dead and buried. Shared it with my family, friends, for support. Tried to research this particular cancer, but there was almost nothing out there due to it's rarity.

    At last, from the 1st week it was discovered to into the 5th week of this drama, the tumors + cyst were surgically removed. Then I was told it would be another 3 'business days' before I would get the results. The surgery was on a Thursday, which meant I wouldn't get the results until the beginning of the 6th week...a great big grrrrr.

    Early in the 6th week, I got a very impersonal call from a stranger who informed me all results were negative for cancer. HUH???! I quickly realized I was furious I DIDN'T have cancer because I was so damned prepared for it. And then the giggles started due to the irony and I laughed til I cried for a very long time.

    6 weeks of a very long drama with a given bad ending. Time had stood still & I felt like I lived in a bubble. I also felt like I had been a puppet, being jerked here, there, and everywhere. Not intentionally, but because of 'the system'; the time it took between appointments with the added (dis)pleasure of knowing my surgeon was off somewhere vacationing while I was waiting, wondering, worrying, and my fate just blowing in the wind.

    So there you go. Medical professionals make mistakes. For a lot of different reasons. And I didn't appreciate the manner in which I was told, by a stranger, who sounded like I was a 'thing' to scratch off her "to-do" list, not a human being.

    I know I'm not the only one, by far, who's experienced substandard medical help, or has been given the wrong information, or perhaps the right information, but in a non-humane way. But it's a little crazy out there, don't you think??

    To those who contine to read my posts tho they may be long or seem disconnected, I thank and love you very much for giving me your time and attention. I've mentioned it a few times, but writing is one of the few life-skills I have left that I feel I still have mastery over; can you keep putting up with me??

    Fondly,

    Judy

  • Keep writing and we'll keep reading! ;-)

    h

  • Whew. Thanks for you reply. I know I've been leaning on this site quite a bit, but was getting concerned I was over-doing it. I'm in this very odd space with my life & PSP in which I can feel lonely in a crowded room.

  • Judy, I was on a webinar tonight for PSP and one of the participants said that you should give the CAREpsp.com web site to every nurse, doctor, and caregiver (family wouldn't hurt either) you come in contact with. That will get them educated.

    Jimbo

  • Thanks for this.

  • HI JUDY

    I HAD A SIMILAR PROBLEM LAST NOV/DEC - IT WAS BREAST CANCER AND I HAD A LUMPECTOMY - HAD TO WAIT 2 WEEKS FOR THE RESULTS AND GOT THE ALL CLEAR

    HAVE HAD 15 DOSES OF RADIOTHERAPY AND AM ON TAMOXIFEN FOR THE REST OF MYH LIFE - AT AGE 67 IT MAYI NTO BE MUCH LONGER WITJH THE PSP BUT I DONT CARE- THE CANCER IS GONE

    LOL JILL

    :-)

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