Medical records and dickhead doctors and standing up for my rights


I am so angry.  With my neurologist.  The one who looked at my Lumbar Puncture and told me there was nothing treatable. The one who told to me try exercise and a psychologist.  And had nothing to say when I told him I had tried all of that and more.  I was too tired and depressed to fight that day. If a doctor doesn’t’ want to treat you, its not going to be a successful relationship, anyway.  Once again I was ‘middle aged female depression’ zoned.

The pins and needles and numbness in my hands and feed, not addressed.

The blurred vision, not addressed.

The balance problems, not addressed.

The constant headache/migraine, not addressed.

The very high protein levels in my LP, not addressed.

The abnormalities on my nerve conduction studies, which he told me at the first consult showed SI joint dysfunction, not addressed.


My test results did not show oligoclonal bands and therefore I do not have Multiple Sclerosis (MS) (which is great, don’t get me wrong) so he is NOT interested in treating me.

At my first appointment he examined me and saw the leg weakness, the balance issues.  On that day I could barely walk.  Which is what always happens when my prednisone taper gets too low.  He was interested and excited then. He thought it was MS.  He is THE local MS expert, but I realise now that if its not MS, he has no interest.  Lazy doctoring.

As I left my appointment, pissed off but too sick to fight, I asked for a copy of my nerve conduction studies. I paid for them.  I know there are abnormalities, because he told me. I can take those back to my first neurologist and/or my GP and figure out what to do next.  They are MY records.  I have a legal right to them.

There is nerve compression somewhere.  Whether it is a disease process or nerve impingement or a peripheral neuropathy, I need to know. And I need to treat it, because my cubital tunnel experience illustrates quite emphatically that when nerves are compressed for too long, they die. And they may or may NOT come back.  Given that my legs go completely numb sometimes, and I can’t walk, there is a clear problem.  Let it go, and my legs might become permanently numb. I’m sure there is only a minute chance of that happening, but I’d rather not take the chance thanks.  Pain can be fought through.  Dead nerves do nothing.

So I asked for my nerve conduction studies.  The receptionist told me that she couldn’t give them to me without Dr Xxxxxx permission.   She said she would ask him, and if I didn’t hear from her, she would be sending them out.  Otherwise she would call me.

Fast forward a week, no nerve conduction studies have turned up, and no phone call.  I expected this. Fits the profile.  Arrogant doctor.  I also half expect the test results to be doctored to be normal, but I guess I’m getting paranoid.  But after being demeaned by a certain kind of doctor over and over again in the last ten years, I’ve had enough.

I called. Spoke to the same receptionist. She told me Doctor had decided not to give me my test results.

And I unleashed.

I told her I needed the test results. I have paid for the test, and the results are legally mine. He has no right to keep them from me.  And I WILL have them.  I said that he refused to treat me and all my symptoms remain, so I need to take them to another doctor.  He has no legal right to withhold my test results.


I waited. I refused to hang up.

She repeated that she could only tell me what was written on my file.

So I asked her to put me through to Dr Xxxxxx, I’d be happy to talk to him. She said he was with a patient. I said I’ll wait.  She said she wasn’t going to do that.  I asked why not.

Finally with a huge sigh she said she would talk to him.  I said be sure and tell him that I will fight this long and hard and I will win, because I have nothing better to do with my time than fight this.  I suggested she also tell him it would just be simpler if he put them in the mail today.

She said she would relay that message and hung up.

I was furious.  I am truly sick of doctors with God complexes picking and choosing and deciding I am making it up.  Seriously. Why?  But withholding my records, test results that I paid for that are crucial to further treatment is a new low.

So I called her back five minutes later.  She answered and I launched into my legal position, and told her I’d spoken to my lawyer and to expect a call from my her.  This wasn’t even a bluff.  My mother’s close friend is a lawyer.  She also has Lupus.  She would very happily go to town on this doctor, because she’s been there.  It took her years to be diagnosed and she has been through the mill with arrogant pricks with more education than compassion and more ego than common sense as well.  And she is feisty!

And I am not giving up.  I have been treated like this for ten years.  And I have had enough.  I paid him for his non-services.  Nerve conduction studies are expensive and unpleasant to say the least.  There is no reason I should need to repeat those tests.

When I finished she told me she’d talked to Dr Xxxxxx, and that he has agreed to put the test results in the mail today.

They should be here by Friday.  We will see.

And now I’m off to my Rheumy. I have called every week for the last three weeks to try and get them to send out my Xeljanz script. I know it has been approved. My rheumy told me it was in her top drawer.  But the receptionist can’t seem to wrap her head around it. So I had to make an appointment or run out of Xeljanz.  It just shouldn’t be this hard.


  1. YOu said it. It should not have to be this hard. I called the disability office today and they told me that I should have an answer by August 12. It has been four years and every time they denied my claim I got sicker, more symptoms, more pain, loss of relationships.And ofcourse more medications. Four years ago my husband and I decided to start the process for disability, that in any event he/we had more then enough money for the rest of our lives. And then after just three denials (I am up to seven) he,s gone. Please Lordgive me a break.

    • And it will remain this hard until doctors start seeing us as partners, not subordinates. Some do, the ones that don’t aren’t helping anyone!


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