Can diagnoses be removed from your record?

DebE13 · Post by **DebE13** » Thu Sep 05, 2013 6:06 pm

In 2011 i saw a rheumie and just noticed in my health records that i was dx with Central pain syndrome and Xerophthalmia. I was surprised and googled the definitions. Both do not fit now or previously my issues. I can see how they may parallel some of my problems. Can these be challenged or doesn't it make a difference? I think it was a wild ass guess of what may be going on with a "normal" patient. I wasn't treated for either dx.

I guess it sticks in my mind because a previous doctor asked if I really wanted to open a can of worms by getting an MRI. These were the same problems I complain of now and I saw this doc prior to rheumie in 2011. He was willing to "spend my money" if it would bring me piece of mind that nothing was wrong but warned I may end up with things on my medical record that maybe I didn't want. My guess is he was referring to insurances that may not want to take someone based on all their problems. (Not sure if that's even legal anymore). It does bother me though that I have some dx that are off-base. Now this is the same doctor who gave me the quality of life lecture and said there were people in third world countries who don't have access to prednisone and would love to take it instead of suffer. Kind of reminded me of the childhood lectures of cleaning your plate because of some starving child somewhere. Wish he could walk in my shoes for even a day.

JLH · Post by **JLH** » Thu Sep 05, 2013 7:02 pm

http://patients.about.com/od/yourmedica ... /a/mib.htm

DebE13 · Post by **DebE13** » Thu Sep 05, 2013 7:20 pm

Thanks Joan, I didn't realize that existed. I don't have issues now because I'm covered under my plan at work but even with that, employees have had to fill out a health questionnaire and authorize potential health insurance companies access to medical records so they could give the employer a premium quote. Of course, one is always worried an employer may find a reason to let you go if you have a lot of health issues.

I just don't like the idea of having misleading dx in my file. Although I'm sure there would be he argument that they are the professional, not me.

I've also found errors in my records which I don't suppose is too uncommon. When I first had my CT scan to investigate my D, it was found that I have a horseshoe kidney. I was assured there was nothing wrong with me just that I have one kidney. Years later a nurse asked me if I was being treated for my nephrotic kidney.

She seemed annoyed she had to do the leg work to find out why that was in my records. I didn't care what she had to do, I wanted some answers.

Post by **tex** » Thu Sep 05, 2013 10:08 pm

Deb,

In July, 2009, I had a TIA (or at least what appeared to be a TIA, and the ER doc could not rule it out, so it was listed as a TIA). When I mentioned the episode on the board, several members urged me to see a neurologist to see if he or she could verify it or rule it out. So I caved in and went to see a neurologist. After extensive testing, including an MRI of my brain, he couldn't shed any light on whether or not I had actually experienced a TIA. But to my surprise, after noticing issues with my balance, gait, lower leg reflexes and sensory perception, he diagnosed me with peripheral neuropathy and Parkinson's disease.

Now I could see the peripheral neuropathy, because I had been having those issues for years, and I attributed them to neurological damage caused by too many years of untreated gluten sensitivity. But this guy had never heard of gluten causing neurological problems, let alone peripheral neuropathy. So that's why he added the Parkinson's diagnosis. The one good thing that came from him was that he introduced me to Metanx, and I started taking it then, and have never stopped.

In May of the following year (2010) I had another TIA (at least they couldn't rule out a TIA), and this time they did extensive testing, including an MRI of my brain, the following morning. A few hours after the scan, the head of the neurology department (with a neurology student in tow, since this is a teaching hospital) came to my room and they both examined me. Fortunately, after taking Metanx for over 9 months, the reflexes in my knees and ankles had improved enough that I was able to convince her that I did not actually have Parkinson's disease. So she undiagnosed me.

So I'm guessing that may be the only practical option for removing a diagnosis from one's records — get it undiagnosed. That's just a WAEG, though.

Tex

DebE13 · Post by **DebE13** » Mon Sep 09, 2013 3:54 am

That's quite an experience, Tex. I feel like I shouldn't even complain.

I may end up visiting another rheumatologist, per the doctor's referral, if things don't improve. I'm going to give it some time though. I'm not sure how much it matters that those dx are there, it's more an irritant and a reminder to me how much I've been shoved around, but you are well aware of how that goes.

Maybe then, I can question it and have it removed. I was supposed to continue seeing the rheumie after my initial appointment but the only thing I was offered was sleeping pills and some other drug that I didn't plan to take so I didn't see the point in it. Maybe it's my fault for not following up but I had MC on my mind.