Stressed over knowing and not knowing

Posted by stuckonu @stuckonu, Mar 1 1:31pm

It's going on five years since I first complained to my PCP doctor that I have “ intermittent “ vision impairment. I realize that calling it that is not saying much. Confidently he did what PCP’s do: refer to a specialist. It took 3 months to get the appointment. I took with me notes, pictures the looked “ like “ what I was seeing. I made some drawings and it seemed as though the Ophthalmologist was ready to do what they do. I thought to myself that he disregarded everything I said. He confidently announced that people would pay good money to have vision as good as mine “ at my age “. No glasses needed and said I “ virtually “ had 20/20 vision. Good news; right?

No. He saw my good vision and not my bad vision. Worse yet it became part of my permanent records. From that moment on it became another complaint about something that couldn’t be seen nor measured, nor validated as “ real “ suddenly I had a number of complaints that were said to “ be in your head “. Referrals to the shrink. The shrink started using the term “ it’s all in your head “

One complaint was “ chest sensations “ I had so many stress tests, 24 he monitors and even event monitors . When things were caught I was told the monitor malfunctioned because there were “ just too many events “ didn’t matter that I said no there were actually that many events. The stress tests and thallium stress tests were so good that I watched the nurses face as my heart rate would go up then curl down. After 28 minutes 18 at full run the doctor joked that I broke the machine that most people don’t make it past 6 minutes. Good news right? No. Because it went into my records and every time I’d go for another test the doctors looked at what came before.

Then on a basic stress test where once again I was running at a steep incline and after 16 minutes they started my cool down. After the treadmill stopped and I sat down but was still hooked up I KNEW IT WAS GOING TO HAPPEN. So I watched the ekg as the tech was writing notes and the nurse was wiping down the treadmill I saw it coming then it happened. Calmly I said: “ what is that “ they asked what and I pointed at the monitor. They both jumped up and started to attending to me. There it was for the first time in years: an SVT. My heart rate was down to 92 dipped for a moment and jumped to 192. I hated how it felt but I was so use to it that I remained calm. It quickly recovered. So that’s one story.

With my eyes I went to my mothers doctor who was a good listener but he too said that I had amazing vision “ for a man my age “ He told me to continue buying dollar store glasses. I had dozens of pairs most 1.00 1.25 1.50 and one pair of 2.50 which I hardly used.

Two days later I was in the ER for unrelated issue and got dumped in a back room around 9 am and around 730 pm the change of shift doctor wanted to know why I was there. The staff didn’t know. He asked if I ate. I had water only. My vision started to fail. I mentioned it to the ER doc and all he had was a line on the floor and chart on the wall. He had my cover one eye at a time and read the chart and told me I was legally blind.

The ER was out of all food and all soda so the doc gave me 3 small and one large jaw breaker “ for sugar “. He released me into the night to drive home 40 miles. I pulled in front of a car coming out of the parking lot and nearly hit three people crossing against the light that I didn’t see.

So here I am getting ready to seem the neuro opthomologist <~~~~ spell check doesn’t have an option. In any event I found out that this team already hug up records which I didn’t want them to see because in this whole story the kiss of death is electronic records which IMHO biases the doctors.

Sorry to drag this out but to me there’s a pattern especially if one is otherwise healthy. So we’ll see if delaying equals permanent impairment.

I hope you get some answers soon – I understand your frustration. I have had an eye issue that comes and goes, sometimes very distracting. No answers from eye doctors so far and told my vision is good. Passed my drivers license eye test without using glasses, but some days eye is blurry enough so that I can't read a magazine without glasses. So search for why this happens goes on…….

REPLY

Have you had a brain scan? Is your glucose under control? Just some questions I'm thinking about.

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Oh gosh so I have a similar series of stories as my adult daughter says: If you are a hammer, everything looks like a nail.
And I feel its that way with many optometrists and ophthalmologists. I am in Canada. Another I would like to add my bizzarre visits…. the end of my last out of town one was she said to me after a few tests which did not check eye pressure or field of vision: You have the eyes of a 20 year old! When I asked about the double vision when peering at something in distance or close when looking at another object: Oh that's age related.
Oh really? I wont go back. She had done an Iridotomy 3 months before and didn't even check to see if the mini operation worked….
I truly feel for you @stuckonu – its hard enough having these eye issues (I have glaucoma and floaters etc.) but to be treated the way we are…inexcusable.
I never wish bad health on anyone, ever, but many of these medical people will get older and "may" have medical problems themselves.. by then, what treatment will they be getting – from a computer? (has anyone mentioned, or does it apply/make sense, that there could be a medication you are you taking or natural treatment that has an effect on eyes.. many do),,,gotta go as now I am seeing those small bright "comets" across my vision….. take care, J.

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@cherriann

I hope you get some answers soon – I understand your frustration. I have had an eye issue that comes and goes, sometimes very distracting. No answers from eye doctors so far and told my vision is good. Passed my drivers license eye test without using glasses, but some days eye is blurry enough so that I can't read a magazine without glasses. So search for why this happens goes on…….

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Thanx Charrlan for sharing your story sorry if I’m a letter or two off. Yesterday I had a super proactive day meaning I pulled out my full arsenal of medications and stuff ( eye wash which strangely has resulted in some of the best item that I use.

I know that I talk a lot and actually I struggle, indeed I do not know how to be brief. I also know that my maximism has negative results at time but for instance you reply made me fell like I had to reply.

If I make a statement that my opinions are based on my experiences and I’m not trying to say that ANYTHING I post WILL WORK FOR YOU, however, consider a few things in every verbose word I say because I’m passionate about telling the world if need be what’s happened in hopes that a light goes off in the readers head and they ask themself is ANYTHING strikes a note or a cord and if so ASK ME TO BE SPECIFIC OR DEMAND THAT I EXPLAIN. And the only thing you need to fear is yet another EPICLY LONG REPLY.

All that said allow me to ask YOU and anyone who may take the time to read my musings. For YOU may I ask what part of waiting for Godot seems right to continue to wait especially when you can come here and read in almost on particular illness, malady, disease or whatever YOU or anyone wants to stick a label on thinking that THEY KNOW WHAT WRONG WITH YOU? I’m not attempting to figure out what you have or to tell you what to do except to consider your own words, about HOW LONG YOU MEET DOCTOR “ I don't know “ or take this medication and let's try that one. And I believe it's forum advisor Colleen who has answered a question I asked about a department or doctor who one goes to when all others have failed. I don't know exactly where her answer is but I'm going to tell you what I heard her say: The Mayo Clinic DOES HAVE a department where doctors are super committed to “ 2nd opinions “ I was asking for something beyond a 2nd opinion but if I recall correctly her answer used those words while at the same time answering my question. Yesterday Siri read to me of a patient who was making an appointment in Rochester for this type of “ 2nd opinion “ which is a name I don't like simply for the reason that most people reach out for “ 2nd opinions in their own life with their own condition usually in the town or state were they live and they often get the same answer with many accepting that 2nd opinion.

Here's were I go off and often more people but try to hang in for a few more minutes. At the end of programming one day Doctor Oz asked a very interesting question about that magical 30 minute period ever night on every major network when the most pilll pushing medications happen. Drug companies target THAT 30 minute period to introduce to potential buyers/users their latest greatest medications. Doctor Oz started that by law drug trials must record EVERY REACTION that a trial of a medication gets by those in the trial. But it was these words that reached out from the TV screen and slapped me into listening and considering his words and point. He said he often wonders why anyone would take a medication for “ a rash “ that lists such vial possible reactions such as lung disease, hair falling out, an infection in you “ PARANIUM “ which I didn't even know had a name and I still wonder why does THAT SPOT on ones body get “ a serious infection that……my never be cleared or go away. Do Oz asked his audience to reconsider take a medication for EXEMA ( for instance ) that can result in something that includes vision loss, “ anal leakage, or DEATH? “ is exempt THAT BAD THAT ITS WORK RISK YOU LIFE, hair, bacterial infection in a place that we used to call “ The Taint “ because we had no idea that that little spot has a name of it's own.

Allow me to go on and if someone can suggest a way that I can post a very long page of medications that can and does in fact result in vision impairment. Two of the drugs I was taking and over times the symptoms from those medications.

I'm very sorry that this post is so long. I think that YOU ARE WORTH IT and everyone is WORTH KNOWING.

I've NEVER SEEN ONE LIST DEDICATED TO MEDIATIONS THAT EFFECT THE EYES. A COMPLE MIND BLOWERS ARE eye drop! Vitamins A E and C listed as drugs that possibly CAN have antagonistic effects. What if they can? Should we not know that something we think of as benign can in fact contribute to eye problems

Remember someone tells us to inject bleach into our body to immediately KILL COVID THE virus that was under control only 5 people had it and it was like the flu.

The main point of yesterday's post about my eyes and my heart that I was abused about by Doctors How many people are told “ it's all in your head “ or to me “ maybe it's flashbacks from the 60’s REALLY?

One more question to all. If you are “ a senior citizen how often did you hear ( when you were in grade school or even high school how often or EVER did you hear that someone suffered from “ MACULAR DEGENERATION”? I NEVER HEARD OF IT! NOT one elderly family member or neighbor or friend. Then in the late 70’s my cousins son had it. We all had to ask what it was and what are the signs and how does on get it. I recall hearing that it was rare. Now I hear about it EVERYDAY! More people than I can count has some form of it. No one asks how or why? Where did it come from? Why? When? And I've never heard an answer.

When I got the list of medications it blew my mind that one of those medications advertised during that 30 minute news period says it leads to Macular regeneration and if not stopped soon enough the Mac DGen continues to arisen even if you totally stop taking the medication.

I'm sorry, but this seems vitally important yet who's heard about this?

What you currently hear now is this: “ if COVID” has caused financial hardship ( companies name here ) can help. Meaning WE WANT YOU TO TAKE THOSE DRUGS!

And we now need an option policy.

How brain washed have we call become?

And think twice about letting the 2ns opinion doctor read someone else not don't give them a tour and MAP of the Capital.

If I need to ill post that list in pieces get ready to pick your jaw up off of the floor!

Don't give up Cherriann!

REPLY
@lacy2

Oh gosh so I have a similar series of stories as my adult daughter says: If you are a hammer, everything looks like a nail.
And I feel its that way with many optometrists and ophthalmologists. I am in Canada. Another I would like to add my bizzarre visits…. the end of my last out of town one was she said to me after a few tests which did not check eye pressure or field of vision: You have the eyes of a 20 year old! When I asked about the double vision when peering at something in distance or close when looking at another object: Oh that's age related.
Oh really? I wont go back. She had done an Iridotomy 3 months before and didn't even check to see if the mini operation worked….
I truly feel for you @stuckonu – its hard enough having these eye issues (I have glaucoma and floaters etc.) but to be treated the way we are…inexcusable.
I never wish bad health on anyone, ever, but many of these medical people will get older and "may" have medical problems themselves.. by then, what treatment will they be getting – from a computer? (has anyone mentioned, or does it apply/make sense, that there could be a medication you are you taking or natural treatment that has an effect on eyes.. many do),,,gotta go as now I am seeing those small bright "comets" across my vision….. take care, J.

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TY Lacy for responding. YES YES YES to medication! I want to post the complete list. I think everyone with vision problems should read this before taking any medication and assess the NEED for the medication and risk and consequence of taking it

I always thought the “ double vision was left to write. Never ever considered that it could be double up and down and consider this it can be both at the same time! I needed at times to wear a patch or I tripped over a door saddle or smash my shoulder into a door jam since I couldn't judge the opening with two eye open.

The phone doctor told me to study and understand certain words that will help my communicate with the new doctors two words are “ FIELD” and “ a·cu·i·ty “

I hate trying to navigate with my vision as it is.

I've said this several times already but it's worth saying again. ( your hammer analogy is one of my favorites! ) BEWARE ABD BE AEARE of this doctors who have only three tools in the tool box! Don't allow them if possible to read what another doctor has written in your records. We are all so screwed by electronic records especial since most doctors think that electronic records see “ The Cats Meow “ ( sorry you yungens that I'm using a saying that is older than me.

But when I think about my doctor visits I notice that basic doctor visits look ABSOLUTELY NOTHING LIKE THE NORMAN ROCKWELL FRONT COVER OF THE SATURDAY EVENING POST: no stethoscope around the neck no little red rubber hammer in breast pocket. No flash light with pointed tip to look into offices, no physical examination only its of questions. As for a copy of your records and see if you wonder if doctors have body cameras as pages about you visit are in your records by the next day at the latest. How does that happen? No more jokes about “ Okay take you clothes off because I don't remember the last time my clothes can of except for a pain shot in my butt and the nurse came in to give me that.

I imagined the next evolution of a doctor visit: you walk in with a handful of sealed envelopes the doctor now wears a black cape and and has a red jeweled swamp turban you hand him one envelope at a time which he places up to the turbin he makes a Karnac like statement then tests the envelope open and reads the questions to the answers he just give. You insurance company or medicare has three charges which is his last envelope before he says Allah-his- mala-dick which means may God remain with you and don't let the don't hit you in the ass as you depart. ZFunk and Wagnal gets a “ stypen “ for keeping the envelopes in a Mayonaise jar for 7 years are you leave or until you get The Itch!

For you Yunguns this is a repeat of an old Johnny Carson routine but the back to the future state of health Care

Stuckonu over and out

REPLY
@stuckonu

TY Lacy for responding. YES YES YES to medication! I want to post the complete list. I think everyone with vision problems should read this before taking any medication and assess the NEED for the medication and risk and consequence of taking it

I always thought the “ double vision was left to write. Never ever considered that it could be double up and down and consider this it can be both at the same time! I needed at times to wear a patch or I tripped over a door saddle or smash my shoulder into a door jam since I couldn't judge the opening with two eye open.

The phone doctor told me to study and understand certain words that will help my communicate with the new doctors two words are “ FIELD” and “ a·cu·i·ty “

I hate trying to navigate with my vision as it is.

I've said this several times already but it's worth saying again. ( your hammer analogy is one of my favorites! ) BEWARE ABD BE AEARE of this doctors who have only three tools in the tool box! Don't allow them if possible to read what another doctor has written in your records. We are all so screwed by electronic records especial since most doctors think that electronic records see “ The Cats Meow “ ( sorry you yungens that I'm using a saying that is older than me.

But when I think about my doctor visits I notice that basic doctor visits look ABSOLUTELY NOTHING LIKE THE NORMAN ROCKWELL FRONT COVER OF THE SATURDAY EVENING POST: no stethoscope around the neck no little red rubber hammer in breast pocket. No flash light with pointed tip to look into offices, no physical examination only its of questions. As for a copy of your records and see if you wonder if doctors have body cameras as pages about you visit are in your records by the next day at the latest. How does that happen? No more jokes about “ Okay take you clothes off because I don't remember the last time my clothes can of except for a pain shot in my butt and the nurse came in to give me that.

I imagined the next evolution of a doctor visit: you walk in with a handful of sealed envelopes the doctor now wears a black cape and and has a red jeweled swamp turban you hand him one envelope at a time which he places up to the turbin he makes a Karnac like statement then tests the envelope open and reads the questions to the answers he just give. You insurance company or medicare has three charges which is his last envelope before he says Allah-his- mala-dick which means may God remain with you and don't let the don't hit you in the ass as you depart. ZFunk and Wagnal gets a “ stypen “ for keeping the envelopes in a Mayonaise jar for 7 years are you leave or until you get The Itch!

For you Yunguns this is a repeat of an old Johnny Carson routine but the back to the future state of health Care

Stuckonu over and out

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Hi..well I vaguely remember Johnny Carson and something about choosing an envelope or ?? Agree, don't take clothes off very often at doctors now… and it seems they don't even want to touch your skin. Even had blood pressure taken on arm when wearing a thick fluffy sweater… how accurate is that? So now when I have med. appointment I wear a short sleeved top…maybe it doesn't make a difference but instructions with our B.P. kits say bare arm is best.
Am 77 and eye issues began while still working, long story short: after many many years with no problems started to get red eyes and very sore at work, ok when got home, back to work,eyes same… I can't tell you the problems it caused and disbelief etc. and I ended up being off my job for 18 months with no income. Because they hadn't done paperwork correctly, the job was still mine and I went back to it! But we had to remortgage our house and I sold any jewellery I had, my childhood stamp collections etc. to make ends meet. (Just want to say that some people thought I was home having a great time, I wasn't).

Anyway, what was discovered … over a year later, was that the Filter on the office Xerox machine had not been put back on by repair man to make it run better; discovered when office manager noticed black powder on the walls and ceiling. By then I was mentally worn out and did not pursue… no one had my back. The xerox had been outside my office … when I returned it had been moved into a closed room – but still to this day if I go into an area with a photo copier, my eyes get red. That is Nothing compared to what followed, but wont write that now. It's just to say that if it walks like a duck and quacks like a duck, it IS a duck and the way I was treated took its toll: thing is, I was the ONLY one in an office of 12 that had this problem… and this is the thing… majority rules … when we are the odd man/woman out and they make comparisons with people who don't have the problem, then they think its our imagination or ???
I have more comments about my eyes as now have Glaucoma but the double vision isn't all the time and no one I have seen seems to think its important! I hope that it will be possible for you to find out "what" the cause is , and get some more support dealing with it, sooner rather than later. It's very scary having eye issues/vision problems and the fact that it is now being said that medications can cause is frightening. J.

REPLY
@lacy2

Hi..well I vaguely remember Johnny Carson and something about choosing an envelope or ?? Agree, don't take clothes off very often at doctors now… and it seems they don't even want to touch your skin. Even had blood pressure taken on arm when wearing a thick fluffy sweater… how accurate is that? So now when I have med. appointment I wear a short sleeved top…maybe it doesn't make a difference but instructions with our B.P. kits say bare arm is best.
Am 77 and eye issues began while still working, long story short: after many many years with no problems started to get red eyes and very sore at work, ok when got home, back to work,eyes same… I can't tell you the problems it caused and disbelief etc. and I ended up being off my job for 18 months with no income. Because they hadn't done paperwork correctly, the job was still mine and I went back to it! But we had to remortgage our house and I sold any jewellery I had, my childhood stamp collections etc. to make ends meet. (Just want to say that some people thought I was home having a great time, I wasn't).

Anyway, what was discovered … over a year later, was that the Filter on the office Xerox machine had not been put back on by repair man to make it run better; discovered when office manager noticed black powder on the walls and ceiling. By then I was mentally worn out and did not pursue… no one had my back. The xerox had been outside my office … when I returned it had been moved into a closed room – but still to this day if I go into an area with a photo copier, my eyes get red. That is Nothing compared to what followed, but wont write that now. It's just to say that if it walks like a duck and quacks like a duck, it IS a duck and the way I was treated took its toll: thing is, I was the ONLY one in an office of 12 that had this problem… and this is the thing… majority rules … when we are the odd man/woman out and they make comparisons with people who don't have the problem, then they think its our imagination or ???
I have more comments about my eyes as now have Glaucoma but the double vision isn't all the time and no one I have seen seems to think its important! I hope that it will be possible for you to find out "what" the cause is , and get some more support dealing with it, sooner rather than later. It's very scary having eye issues/vision problems and the fact that it is now being said that medications can cause is frightening. J.

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I have MD, not noticeable to me but to eye doctor. Recently I had a bout with the center of my vision being a black circle., but only at night. I check the Amsler Chart daily. No problem. Discovered by accident it was probably from benedryl as I stopped it due to fluid in throat after taking it at night to help with sleep!

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@barbbie

I have MD, not noticeable to me but to eye doctor. Recently I had a bout with the center of my vision being a black circle., but only at night. I check the Amsler Chart daily. No problem. Discovered by accident it was probably from benedryl as I stopped it due to fluid in throat after taking it at night to help with sleep!

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You should see your eye doctor right away. I'm not a doctor, but this symptom could be fluid in the retina. The Amsler Grid is not very sensitive in detecting conversion to wet MD. You should not let this go.

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@fighter

Have you had a brain scan? Is your glucose under control? Just some questions I'm thinking about.

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To further: not sure if I replied to you. I had an MRI and MRA. No concerns. About glucose most blood tests do the 3 month average. That might be part of the problem since a 3 month average doesn't show highs and lows. On doctor has started looking at all of the evidence but she has not figured out how the pieces fit together. That said I think some answers may be there.

Today is my appointment with the specialist. I'll let you all know how it goes.

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Today is my appointment with specialist. I'm worried about the electronic records. I think they are as likely to steer the new doctor down the wrong path.
Since I haven't had an appointment yet I'm not allowed to communicate directly with the doctor. Her secretary is allowing me to send messages to her and she passes them on to the doctor but I've only gotten a reply after a third email saying I expected a reply. Was told “ I forwarded all of your letters to the doctor. She told me to tell you that she will answer ‘ ALL YOUR CONCERNS AT YOUR APPOINTMENT”
I wrote back and told her a joke I once heard from Howie Mandel: “ When I ask people what they really want and they say EVERYTHING I ask them: “ Where will you put it all?”
Meaning If she thinks she can answer ALL OF MY QUESIONS during my appointment, I'm figuring that I might have one of those 40 min appointments.

Have you noticed that most appointments are 10, 20, or rarely 40 min appointments. Take notice if your doctor is talking with you but has one hand on the door knob. That means you're talking too much.

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Today is a bad day which might be good for seeing what's wrong. That said things often change quickly.

I spoke on the phone with my PCP YESTERDAY He’s a really good listener and he's fascinated with how I look at things. Yesterday I told him that as my vision fails I forget the name of somethings that I can't see. I know he was really fascinated by that observation including the fact that it's now having an accumulative effect.

I liked it to hearing impaired people forget how to say certain words that are commonly connect by sounds like hard K or other words specifically related to particular languages.

I find myself searching for easy to say certain things that have now been molded by my vision changes and limitations. He stressed relating that fact to the specialist.
( in my 40 minutes appointment “ I'm struggling to remember all of the changes in 5 years.

I now think I never saw the world like other people but how do I prove that? I'm not even sure how to say that without sounding like a person on ACID.

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@pacer3702

You should see your eye doctor right away. I'm not a doctor, but this symptom could be fluid in the retina. The Amsler Grid is not very sensitive in detecting conversion to wet MD. You should not let this go.

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I did. Diagnosed with early stage dry MD.

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