Letter to PCP

[bbisweary]

I wanted you all to know that I finally wrote a letter to my "former" PCP who had written in my permanent records that I was malingering and the next visit wrote I had a Conversion Disorder.  It was a very intense letter that included my written reports from the two NS's I had seen.  I told him I was giving him a free ticket on the Conversion Disorder only because 57% of Chiarians are first diagnosed with this. However, I demanded he retract the malingering thing due to the negative effects this has on a person's character and reputation. I told him I would give him a chance to do the right thing and write a complete retraction (I supplied him with a rebuttle to all he wrote proving him wrong), but stated that if he doesn't do this on his own, I will file a formal complaint to the Board of Medical Licensures.  I will definitely do that if necessary.  He had stated that I was dragging a leg when I left his office but watched me out his window and I wasn't when I reached the parking lot.  What a dope!  I have had severe stiffness and will drag a leg, or scoot, or shuffle anytime I sit for any period of time, and up until the last 6 months or so, I would get it "stretched out" and walk normally.  I have done this for 5-6 years and was told it was the fibromyalgia and there was nothing I could do about it. (Now I know it was the Chiari).  Now, however, when I get stiff I usually stay that way.

I will keep you updated on whether or not he replies.  I just really feel this is a battle we need to win!  We can't just let them write libelous garbage in our permanent records and get by with it.  I also included some Chiari educational material from Conqerchiari.org and told him he needs to get educated on this disorder or dismiss himself from any  patient who presents to him with an MRI that identifies a Chiari malformation.  Run, Forest, Run!

[bbisweary]

Yes, I have an 11mm Chiari malfomation and other issues.  He ordered the MRI, twice actually, and of course it was on there both times.  He gave it a "dishonorable mention" and said it doesn't cause any symptoms. I hadn't seen an NS at the time, but he did send me to NLs and since none here know anything about the CM they also said it "shouldn't" cause me any symptoms.  I had to take matters in my own hands and go out of state to the Cleveland Clinic  where I went from NL to NL, four in total.  Even in a place like that, not all NL's are familiar with CM.  Finally, I was sent to the headache clinic where I saw two NLs, both familiar with CM, and they referred me to Dr. Di, an NS, who said my symptoms were in fact from the Chiari.  Whew!  It was a long, hard road.  I'm scheduled for surgery in September and praying it will be sooner.

[Amethyst3]

Oh my goodness, I always request copies after every visit.  You would be surprised sometimes about what they write.  It helps greatly when deciding which doctor to keep.  On the way out the door from a doctor appointment, stop at the front desk and ask the receptionist for a "Medical Release Form."  Fill it out requesting the Dictation dated the day of the visit, to be released to yourself.  Then they will send it to you in the mail.  I also do this at the Medical Records office of the hospital when I have a diagnostic test done; I request a copy of the radiology/results report, as well as a copy of the images on CD disk. Sometimes during the imaging if you just ask the technician for a copy of the images on disk, they will just hand it to you before you leave. If you have never requested your records, you may have some fun reviewing your records.

By the way, as you have learned, NEVER trust your doctors to complain about social or mental health issues, even if you do have them.  It will irrepairably damage your medical records until kingdom come.  Just keep quiet about that, but take your issues to a *separate* psychologist/counselor/psychiatrist.

[denverluv]

Just wondering - do you have Chiari? I mean, did you have an MRI and a Chiari DX? if so, then how can he still say you are malingering?

[Devin215]

I had a doctor who put in my file that I have anxiety and Depression. I have only dealt with that one time when someone I knew and was involved with was shot and killed and that was over 5 years ago. It still lingers in my record and anytime I have a Dr tell me I look anxious or maybe I am depressed I tell them its because of them and they get all pissy. No one has mentioned it since and it has been over a year. Maybe if we all get a little sarcastic and learn how to throw verbal daggers we can have all the "quacks" running off with their feathers ruffeled and make them learn a thing or 2 hahah....either that or lets all go in a put on a good show and act a little nutty to watch them flip out then tell them they look anxious when they show physical signs of being uncomfortable!!...Oh man that would make me feel soo good!!

[bbisweary]

You can just go pick up your medical records.  I think if they mail them you may have to sign a release.  Also Hippa laws does prohibit them from sending other doctros reports so you have to pick them up individually in each office.  I have seen NS's also that absolutely thought I was faking, and/or psychologically ill. I think it is a crime that they can write all this stuff about you and make it sound like fact. You do have to advocate for yourself with CM because the medical profession is so dang ignorant about it that you get thrown under the bus. I have been told by an NS in a very reputable clinic to "Quit going to Doctors because I frustrate them and they frustrate me"  I don't know your spiritual beliefs, but for me, it takes daily prayer to keep myself pressing on.  I actually feel like giving in and giving up, until I get angry enough to pick myself back up and press forward.  I am now scheduled for surgery at the Cleveland Clinic in September. But I had a bad encounter with one of their doctors also.  My prayers are with you, don't give up or they win!  One day maybe we can all unite to raise awareness of CM and change the way we are treated.

[JesVS]

This makes me a little scared about what is in my file!!  I guess I should get copies and take a look.  Although my PCP and NL have not said anything directly, I distinctly get the feeling that they believe I am wasting their time.  PCP just referred me to a rheumatologist....  

Can you just call an office and request copies?  Is it a HIPPA violation to have them mailed, would I need to go there in person?  

[Amethyst3]

...Wow, good luck, I have always wanted to do that!  It bothers me that some doctors act like they are in a creative writing class, and can make up whatever in the world they feel like writing down, without consequence.  Good luck!  (And I would CC: the office CEO/ Administrator to let them know what was going on).   Let us know how it goes.

[ChiariWolf]

:-) Good for you!!!! I recently used a form letter from Intuit's 'Its Legal' program. It was sent to a few of the doctors involved in my 'non-care' last year when they put me in a psycward after presenting to the ER with stroke symptoms. i.e.- one side of my face drooping and grayish colored and both eyes the nurse wrote 'are gray in color'. The next morning the 'best' NL and NS concluded that I made up the symptoms as they where not present at that time. grrrrrrrrr don't even want to think about that... but anyway this letter requests that the 'doctor' seal your records and that 'no one' may obtain a copy of his findings with out your explicit permission.

Didn't do anygood. I know because my PM doctor that is doing the injections is in the same clinic. When the PA there and I where discussing what has happened this past year she pulled up my records. The NL handwritten notes where up on the screen. To me it's a tremendous injustice! They can say whatever they want because it is their opinion. Yet if I as their 'patient' post anything on about their lack of care or about their total ignorance to the condition for which I suffer.... Especially if I were to say a specific name such as say Brian F. Hoeflinger or James E. Sander and state how poorly they where at dx the problem... Well they would both have a cow and most likely pursue legal action. Yet despite the privacy acts in force in the US and despite my legally requesting they either seal or destroy any records they have of my non-treatment they still have their 'false' opinions posted for all other doctors in the group to read.

Yes, the names are real so perhaps this post will get pulled. Perhaps I'll even get booted off because my signature doesn't include M.D. after it so I'm only allowed to say how great they are... problem is they where neither one even close in their dx.

Wolf