My doctor didn't listen.

Posted by Rochelle . on

Alright, I'll admit it.  I've have been depressed.  Not blue, not sad, but straight out loss of interest in life depressed.  It all stems from my neurology appointment on January 2.  

I first started getting sick about seven or eight years ago.  It was mostly physical.  I was exhausted and in constant widespread pain.  Many useless doctor visits later, I discovered I had developed, for mysterious reasons, multiple food allergies.  Avoid the food and the pain and fatigue dropped by 90%!  I went back to functioning.  However, about 2-3 years ago, my brain started to be affected.  First it was little things like forgetting appointments... but it has progressed to the point that I am no longer functioning in my day to day life.  My brain feels like it has turned into swiss cheese and my thoughts move through mud.  I forget things all of the time.  I never know what is in a package from Amazon because I don't remember what I ordered.  It is always like Christmas!  I have to set alarms or I will forget I was doing something.  I have to set a timer on the stove when I'm cooking or I will walk away and burn whatever is on the stove.  Last month I was leaving to go somewhere (I couldn't tell you where now) and I forgot something (shocker!) and went back into the house to get it.  Apparently, I forgot I was going somewhere because my husband came home an hour later and asked me why the car was running with the driver door open.  Thank GOD he had the kids with him.  I forgot to pay the electric bill and the lights were turned off on us a few weeks back.  

The only way I am surviving is by automating and alarming everything I can.  I am forgetting birth dates, the names of people I used to work with, my pin at the grocery.... I have friends on facebook that I have no idea where I know them from.  I mean, I know they are from my hometown but I don't remember them from my childhood.  They post about the fun we used to have.... for me, there is a big hole.  Swiss cheese.

I'm also saying things wrong.  I can't remember the word I want to use.  Or worse, I'll say what I think is the correct word but what comes out is actually something completely different.  Sometimes it is related... sometimes it is not related at all.  Sometimes I know I said the wrong thing, but more often I'm not even aware I said the wrong word until someone corrects me or questions what I said.  In my mind, I saw the correct object and thought I said the word to match.

I can't work in my field anymore because it requires the ability to adult, and I'm failing at adulting at the moment.

So, I see a neurologist back in May 2017.  He does his basic testing and declares he can't find anything wrong.  I can remember five words for three minutes because they told me to make a mental picture.  I did and I could remember.  I can subtract by sevens.  I can alternate A1B2C3D4E5 (that's all the higher they go).  I can read words put in front of me (they didn't ask if I comprehended what I read.  I didn't).  I can walk in a straight line.  I can draw a 3D box from a picture put in front of me of the box.  I don't have dementia, but SOMETHING is really wrong with me.  He can't find anything, so he refers me to a specialist.  The wait for the specialist is SEVEN MONTHS!  SEVEN MONTHS!!!!!!  I waited to see this guy for seven months after waiting three months to see the first guy.

I walk into the exam room and he asks what is wrong.  I start explaining and he cuts me off with his own explanation.  He is mostly right, so I proceed.  I had brought a list of concerns because I know I will not be able to remember them.  He sees I brought a list, comments on it, but never asks to see it and I forget to bring it up again later until after I left.  I know I explained about not being able to work anymore.  I know I talked about leaving the car running - that stuff is in the notes.  I swear I talked about switching words too because that has been a huge issue for me.  In fact, I'm pretty sure I lead with that.  

The guy gives me the same exam the first guy gave me and then declares this is all caused by stress.  He hasn't even heard most of my symptoms.  I tell him with all due respect, I don't think it is primarily stress.  Yes, stress probably played a role, but that can't be everything because I've basically been a bump on a log for the last year.  I no longer have stress other than my brain has quit working on me.  But, I was so hopeful about this visit where i was sure they would figure out what was going on that it didn't stress me.  He insists I'm wrong and that my childhood was full of pressure (there was no other explanation for why I was successful) and that I just couldn't handle it anymore.  He was SO wrong.  I said he was wrong about my childhood.  He wrote in his report that I idealized my childhood and that I convinced myself there was more going on then there was.  Well, my childhood was ideal, seriously.  Not perfect, but pretty damn close.  He  couldn't accept that I was successful because I wanted to be, not because of pressure from my parents.  

It was nuts.  This guy knew nothing about me or my past, but he had me pegged as some type A super stressed person because of my profession.  Nothing could be further from the truth.  But, he wouldn't hear it.  I asked about additional testing.  He said none was needed.  See a psychologist to learn mindfulness (WHICH I ALREADY PRACTICE) and follow up in a year.  I said I already do mindfulness and have sought counseling in the past, I don't have any unresolved issues.  He said he thought "something will pop up during counseling you didn't realize was an issue."

Dear readers, I have never felt more judged and dismissed in my entire life.  I tried to protest one more time and he actually said to me, "You don't have dementia, you don't have Alzheimer's.  What?  Do you want to have one of those?  We've done the testing.  There is no other testing except to do a brain biopsy, but that isn't advisable while you are still alive.

Ok, I don't know much about neurology, but I would have to think there is more testing available than 20 questions given in a 10 minutes span.  My sister thought I was getting a neuropsych evaluation.  I thought I was getting additional testing - anything other than the SAME TEST I had seven months prior.  Why did I have to wait seven months to see a specialist who did the SAME TEST????

Now, I'm not knocking mindfullness or counseling. Both are great techniques.  However, I think something else (or in addition) is going on with my brain.  AND. I. WASN'T. HEARD.

I went home and cried.  No, I sobbed.  I have never felt so hopeless in my entire life.  I had just been surviving until I could get to this appointment to finally see the specialist and get some answers.  Instead, I got judged and dismissed.

I actually got to see his notes this week.  He wrote that I complained about not being able to comprehend reading, especially dense papers.  That I was forgetting work related things.  And, that I left the car running.  But, it was only affecting my work and not my day to day functioning.  So, apparently leaving your car running isn't part of day to day operations.

I'm sorry, this has turned into more of a rant.  It has been over a month and I'm still just so upset.  One thing the doctor was right about, stress does affect the brain negatively.  If I thought I was bad before the appointment, I'm positively non-functional now.  Nothing like having all of your hope crushed to up the old stress level.  Now I am stressed, now I am depressed, now my brain is even worse.  He created a self fulfilling prophecy.

To top it off, the psychologist he referred me to doesn't even see patients to help with whatever he diagnosed me with having.... stress related cognitive dysfunction, I think.  His office was informed but he never called me to follow up.  I finally remembered that I was supposed to hear from a referral (it was only four weeks after the fact.  no big deal *insert eye roll*).  I called and found out that no one is bothering to follow up because they won't see me.  I left a message for the doctor two weeks ago.  I got a letter today referring me to the same place that won't see me.

So, I'm getting a second opinion.

You know, I really think he meant well.  Knowing I used to do scientific research, he even printed out a few journal articles for me to read that reinforced his point.  My issue is that the articles referenced cognitive deficits in mice after stress.  The deficit was acute and ended once the stress ended.  My issue is chronic and there is no extraordinary stress (at least there wasn't before my appointment with him).  Plus, that was in mice.  His model didn't fit all of the way around.

The really bad part.... I now have in my record that it is all in my head.  

If only he would have listened to me.  Maybe he would have come to the same conclusion - but I can promise you I would have been a lot more receptive if I knew he was making the decision with all of the facts.  Instead, he took five facts and drew his own, incorrect rendition of my life.  Then, he forced his questions to fit his scenario.  He kept asking me about big stressors in my life.... divorce, no.... finances, no.... issues with my children, well, my one daughter was diagnosed with dyslexia but we have interventions in place and she is doing well, was my answer.  He wrote in his notes, I was stressed by my daughter's illness.  But, I'm not.  She has all A's and B's and is doing great.  Sleep issues, no.... problems with family members, no.  Then he told me that I am rather intelligent and intelligent people are great at justifying and convincing themselves that something isn't a problem when it actually is - like my pushy parents (who ACTUALLY WEREN'T PUSHY).  I think he had to be projecting.  What else can explain it.

Anyway, thanks for listening to my therapy session since I apparently can't get in to see a therapist as prescribed.  I honestly don't think I needed one until I was essentially told that I was trapped in this situation for another year because he wasn't going to look to do anything until I had tried mindfulness for a year.

The funny thing is.... after getting my referral for the second opinion... the depression has lifted and I have hope again.  I have seriously dug deep just in case I am in denial about something and the doctor was actually right.

My verdict.... he was dead wrong.  But then again, I'm probably just deluding myself.  What do I know?  It is just myself I'm talking about here.  I can't possibly be self aware.

If you are a doctor, please never do this to your patient.  It was miserable and disempowering, and felt like a violation.  I will probably need therapy for that visit.


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