Medical record issue

Has anyone on here been labeled in your medical record as being a problem patient or psychological overlay by a neurologist and says your MS symptoms are all in your head? If so how did you handle this.

[Miriade]

Yes, I had this problem with a young Neurologist which did not have enough years of experience, knowing only the typical picture of MS, which is not me. I do not have the external physical disability. I do have ups and downs in my cognitive, speech, fatigue causing symptoms of depression that I recognize very well. I could see in her face in the very beginning how I was not fitting in her criteria from her school manual book. She said at the end that I need a Psychiatry. I mentioned later to my original Neurologist, and he said its really need many years of experience exclusive in the MS specialization to understand the variations in each patient. I am also from the medical field and I know well what is psychiatry and or neurological manifestation in a good evaluation of patient complains, history and symptoms. Moreover, the doctors do not have the full picture of how the person live now and before creating a stereotype if they dont have the hability to see the individuo,lack of time, or whatever in their busy mind ,less focus on the patient for sure. One think I learned is that we need to prepare a "portfolio" of progressive symptoms, facts,medications, etc, to help the doctor speed the appointment and getting better undertanding of the patience during the time of the consultation, looking to you and typing in the computer.

[PatMelnikow in reply to Miriade]

I was the Director of Health Information at a hospital for 30 years. You have the right to request a copy of your record and submit a request for an amendment to be made to the information contained within. If the request is denied that request also becomes a permanent part of your record so any future physicians can see that you disagree with his assessment. If granted you should ask for a copy to be certain the changes were made. Hope this information puts you at ease.

[Miriade in reply to PatMelnikow]

Great answer. Thank you.

[Hidden in reply to PatMelnikow]

Hello! Thank you so much for your response!! I got copies of my record and disagreed with the doctors errors/opinions. So I filed an addendum to be placed within my record disagreeing with his comments and assessment. Being I could not get a phone call back from the doctor whom I only saw once and have had difficulty getting medications, phone calls, etc from him or his office. I'm also taking a copy to my next doctor to have placed in my record with him. Just in case wasn't placed in file. In your opinion have I done everything I can or should I still request an "amendment" disputing his assessment/asking it to be changed? I'm standing up for myself best I can without starting a back and forth conflict.

Since writing this assessment about me some of my other doctors have seen it and are treating me differently now and wanting to throw every test at me possible/overreacting because I have been labeled a problem patient due to this doctor. All because I saw him once for all of 30 minutes and he wanted to change my medication for MS. I wanted time to think about it and this did not sit well with him apparently. His view was I'm a problem patient because good patients do as a doctor says. My view is this is my body, my life, my quality of life and my choice/decision. Taking time to make a decision is healthy and anyone would do this.

Thank you for your time I really appreciate your help. I've never experienced this nor had problems like this before.

[Judi4]

Yes. I'm bipolar, so when I went back to discuss current symptoms, the neurologist kept telling me I needed to go back to the psychiatrist. He was making me feel like my symptoms were in my head. I am currently looking for a different neurologist.

[agapepilgrim in reply to Judi4]

Me, too, I know the difference between Bi-polar symptoms and these new emotional erratic uncontrollable actions caused by these MS brain lesions!!! They assume they know it all!

[Miriade in reply to Judi4]

You need to keep trying until you find someone who can understand what you are describing about your symptoms.

[Fancy1959]

Medical record issue, hi it's Fancy1959. I would first like to invite you to join our chat room. it seems you really need to find the support and wisdom of the individuals fighting MS in this chat room. I believe the acceptance and the support you would find here could do you a lot of good for your general overall health and state of mind. As far as your doctor's not believing that you actually have MS there are some very simple test that can be done to definitively show if MS has attacked your nervous system. Has your neurologist done MRI'S of your brain, neck, and spine, looking for lesions that MS leaves behind? And the test that defines MS with absolutely no doubt is a specific spinal tap. If my neurologist accused me of being and "MS imposter"' and labeled me as having psychological over lays without running the above test I would walk out of his office and look for a new neurologist. Then the first thing I would do is request the new neurologist to do is to run the tests to determine if in fact you do have MS.

Please keep me up to date on your prognosis and the testing that has been done or will be done on you. It sounds like you could use a big hug. I wish I could reach through this electronic link we have and give you one. Remember doctors are not always infallible and it's always important if you strongly disagree with a prognosis that you get a second opinion. You need to be the one that is in charge of your health not the doctor. Nobody knows your body, your symptoms and conditions as well as you do. Keep your chin up, plaster a smile on your face, and go back into the neurologist office and check to see what testing he's done to you. After you find that out you will be able to determine which direction you need to go. Again please keep me in the link. It doesn't matter if you have MS or not all of us with chronic health issues need to stick together and help one another heal through support, caring, communication, and belonging. Sometimes it is more urgent to heal the soul than the symptoms and chronic health issues we face......

[Hidden]

Mine dismissed my fatigue, overheating, and pseudoexacerbation of symptoms on hot days... He said I should focus on my depression/anxiety/insomnia (all of which are in check with medication; and have never been mentioned to him before, he was merely grasping at straws from my patient history) & he said since I am not the "ideal weight" I should focus on a rigorous exercise program, and until then he doesn't think my symptoms are serious enough to be see or try a fatigue medication (all of which have changed since I got MS, but he wouldn't know that because he did not listen to me, and brushed me off on his resident who did a terrible job).

I think the best advice I was given was from this forum, and that was to find a neurologist at a MS center - which is what I am in the process of doing. No matter your neurologists title or how big the medical institutes name is >>> I highly advise to listen to your body, and find a neurologist that is knowledgeable, experienced, and who is a patient advocate - not just their own advocate.

Best wishes to you! Stay strong! This is a great group for support!!

[JeenaRae]

I have been fortunate enough to not have this issue but I have also made it point to let any new Dr I am seeing know up front that I am very well verse in my condition and if they can not deal with me asking questions and wanting to have a dialogue with them on what the best path forward is for me then let me know now so we can get a Dr that is willing to work with me. I have been lucky to have great Dr.'s that are knowledgeable and amenable to working as partners and not dictators.

Our health and condition is ours and no one should make us feel crazy for wanting to take control of or lives and health.

[Fancy1959 in reply to JeenaRae]

Amen jeenaRae, amen!