In prep for my visit to Philly next week to see a specialist, I have been organizing and summarizing my medical records.
I went through the process to obtain them all this summer (Rheumatologists Dr. A, Dr. B and Dr. C, Ophthalmologist Dr. O and Neurologist that I just realized I never “named” so let’s call her Dr. N – 5 doctors in two medical systems) after I made the appointment in Philly so I already had them and had flipped through, but hadn’t really organized and summarized them until this week.
I could have had them sent directly to Philly and it would’ve been done for free, however I wanted to have a copy of all these records after all the craziness I’ve gone through with all these appointments. You have the right to have your medical records, but they most likely will charge you for the time and copy/mail expenses. All together it probably cost me $200 to get all my medical records, but to see what these drs have been putting in there is worth every penny!
Let’s just focus on Dr. C for this example of why everyone should read their records. He was the last rheumatologist I’ve seen out of the three. He’s at KU Med and I spent 8 months working with him and had 6 appointments. In the medical notes of those 6 appointments there are 16 errors. These errors include incorrect treatment history, incorrect diagnosis history (both in which diagnosis I received and for how long) as well as incorrect description of my symptoms.
Some errors are consistent – he discusses the “intermittent burning” I reported in my extremities in three different appointment summaries – which is absolutely NEVER something that I indicated. I’ve never, ever, to any of these doctors indicated that I’ve had burning or tingling – and any time they’ve asked if I did I outright said that I did not (Dr. N in the same KU Med system has this fact correct in the notes of all three appointments I had with her – she states that I deny having tingling or burning, which is correct).
Some errors are inconsistent – sometimes he says I was diagnosed with Sjogrens “3 years ago” while others indicate that I was never diagnosed with it prior to him doing so. The actual answer is that I was diagnosed with it in April 2013 by Dr. B and Dr. C confirmed that diagnosis in Nov 2013. His 6 appointment notes have these inconsistent errors despite the fact that I brought a one-page written out timeline summary of my relevant lab work, diagnosis and treatments while under the care of Dr. A and Dr. B.
He recorded past diagnoses that I never had, multiple symptoms that I never described or exhibited, ignored multiple symptoms I did describe, listed treatment histories incorrectly – incorrectly indicating what I prescribed when and for how long.
And let’s not forget the inconsistencies that led me to write that letter to him, to stop seeing him and make the appointment with the specialist in Philly! Under “Assessment and Plan” from the February 20, 2014 appointment, he wrote:
“3. I have discussed with the patient to continue with Plaquenil 200 mg twice a day and pilocarpine 5 mg one tablet twice a day. I will follow up on the results of her biopsy evaluation. I will plan to start Rituxan 375 mg/m2 one infusion weekly for a total of four after her biopsy reports are available. We will see if her sicca symptoms and chronic fatigue improve after initiation of Rituxan therapy.”
So on Feb 20th he said he’d start me on Rituxan after the biopsy results are in with the specific, “written down in my medical record” hope that it would improve my sicca (dry eyes and mouth) symptoms and chronic fatigue.
But then on May 16th, 2014 – my very next appointment with him he indicates:
“2. We discussed at length regarding her chronic fatigue and muscle weakness. She has undergone extensive evaluation with CBC, CMP, inflammatory markers, TSH, vitamin D 25-Oh, myositis panel and extensive autoimmune testing for which all laboratory tests are unremarkable other than her diagnosis of Sjogren’s Syndrome. I discussed with the patient that I do not feel that immunosuppression [the Rituxan infusion treatment] is indicated at this time. We discussed potentially a trial of prednisone, but I do not feel this is indicated; and therefore, not performed. The use of systemic steroids would be indicated if she had extraglandular manifestations such as diffuse interstitial pneumonitis, glomerulonerphritis, vasculities, and peripheral neuropathy for which she does not have any of these features.”
So basically on Feb 20th he said he’d start me on the Rituxan to help with my sicca and fatigue…and then on May 16th said that because I “ONLY” had Sjogren’s he felt like Rituxan wasn’t warranted because I “ONLY” had sicca and fatigue (which isn’t true because I do have other things – like the fine motor issues that he’s choosing to ignore) – not lung involvement or peripheral neuropathy (the burning and tingling that he was so insistent I had for so many appointments despite me outright telling him I didn’t have that).
The very two things that he documented that he was hoping Rituxan would help on Feb 20th became not enough to warrant Rituxan on May 16th.
No explanation for this 180-turn at all.
And he indicated (also in that medical record from May 16th) that my being upset with this appointment was evidence of depression that likely played a role in my chronic fatigue.
No, asshole, it’s not depression (for which you never once evaluated me before throwing that label out there). I’m upset with the fact that you’re a horrible doctor and I spent 8 months of my life, a lot of money, time, energy and hope on you before I figured that out and now I have to start all over again with someone else…that’s why I’m upset!
And this, folks, is why you should pay the money and get those medical records – if someone documents 16 mistakes (and the mistakes are even inconsistent with each other) in 6 appointments and documents one thing at appointment #5 and then says the exact opposite at appointment #6, fire them. Quit seeing them. Quit giving them your time, money, energy and hope.