Connect
Mental health, do Dr.s know/care how bad our QoL is?
Do doctors/ therapists even know what QoL means for us "head cases"
Why did my neurologist, laugh, then diagnose me on the spot with Conversion Disorder, when I showed him a video clip of me involuntarily violently jerking in my chair and walked like I was like I was drunk. He asked why are you grabbing the chair (😱🤪), because I was trying to stay upright. I could not stop the jerking and it physically hurt and scared me some. He said "Oh, I didn't know you suffered with child abuse, as when you were young." It's not a sentence I will ever forget. The more I denied it, the more it looked like I was lying. I was devastated and choking back the tears, I quickly got out of his office. I am proud of myself just for just leaving...or he might have gone home with a black eye. He then had the audacity to put the diagnosis of Conversion Disorder in my file, so every single person who opened my file, this was one of the first things they saw. Conversion Disorder can be related to many issues, but by far most believe it is only due to childhood trauma. I saw that neurologist for 15 years, for only Botox for migraines.
I had to look it up cuz I didn't know what it meant. Holy S., then I saw super pissed at him. I finally got my psychiatrist to put a note (he's not allowed to remove another dr.s notes. But he told me that, it's actually against the law, in CA, to do what the neurologist did. In CA , a psychiatrist and a doctor, both must agree before making that diagnosis.
This discussion started with the statement below , authored by jania59. When I first read it, it really hit me in my gut. It is TOO true and thought, if we shared honestly, we might say/hear something simple to help each of us. If we share, we may say/ hear something simple that will be negative to us.
"Mental health has been pushed to the very back of progress in healthcare. There have been several campaigns to increase access, support, and melt the stigma away ".
I thought jania59 was more eloquent in her message, than I ever could be. The stigma of having mental illnesses, leads some outsiders to really hurt us, even if just with their words and ignorance of mental illness.
There are many many people who have mental illnesses or even just challenges. I have felt pre-judged by every new dr. I have had. It hurts me and it feels like it affects what type of treatment I will get from a Dr. When a Dr. blames depression for my itching, that dr. goes on the idiopathically ignorant list. Why is my depression instead of my pSS(primary Sjögren's syndrome) autoimmune disorder ignored.
I guess I should feel lucky in an odd way, antidepressants and anxiety medications have never ever worked for me, all I got was the horrible side effects. But at least another dr. does not see a list of psych meds, cuz they can't blame my problem on the "head meds". I am not against meds, if they benefit someone. My younger brother might well have lost his life without the meds, an exceptional psychiatrist, and support.
I'm am looking forward to learning from others, how you are feeling and what has been your experience in this quagmire called mental health. Jania, thanx for letting me share your thoughts with everyone.
Shelley W
Like
Helpful
HugInterested in more discussions like this? Go to the Mental Health Support Group.
Connect
Hello @shelleyw,
I can understand your frustration with the experience you had with the neurologist. Feeling anger is understandable. As much as the mental health community has tried to raise the level of awareness and acceptance of mental health problems, many health care professionals still don't practice tolerance and acceptance.
I would encourage you to find a new doctor to help treat your migraine problem. I'm sure that there are many who would work with you in a more compassionate manner.
As your confidence in approaching a new doctor might be colored by this difficult experience, I think you might be helped by reading this discussion on Mayo Connect titled, Keys to a Successful Doctor's Appointment. In the first post there is a video which is quite good. Here is the link to that discussion,
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
I wish you much success in finding a more compassionate health care professional. Will you read the post in "Keys to a Successful Doctor's Appointment" before your next medical appointment? I really think it will build your confidence as you approach another appointment.
-
Like -
Helpful -
Hug
12 ReactionsI will reveal my experiences which go back to the 1980s. It is not pretty. I had childhood trauna dysfunctional family poor learned coping skills etc. A lot of anxiety codependency etc. So I began seeing psychiatrists. Overmedicated over diagnosed etc. All for profit. I had to do research on psychiatry from the 1980s on for this info. I do not believe they cared at all. I have since 2014 many good providers but I am now proactive and do my own research so the provider and I come up with a treatment plan. Since 2014 I have been deprescribed many medications under medical supervision. I am a different person . Better.Not sure how to help here much except caveat emptor and lowest dose for the shortest amount of time. Research your providers if possible for education. Certification .complaints to licensing boards. Patient reviews. I am so sorry this happened to you
-
Like -
Helpful -
Hug
3 ReactionsDear @shelleyw
Your said “spot with Conversion Disorder” of your “head care” when “jerking on my chair” and feeling “I was drunk”.
Have I done this before? You can feel, but I feeled from “seizure” from my brain that controlled good or bad. My hand, fingers., legs(part of it), talking in things that I can’t know or understand of what in saying or jelling and falling down, not staying upthgo home.
These meds, that I have the things, stopped 95% being a non-seizer, thankfully, for the last 3 yrs ago. I take it, 3 times a day. Yes, I hate brain-meds, but 12 years ago, I had a bicycle accident that destroyed a big part of my brain and the usages of it.
Well, thx and I hope doctors can “fix” your brain-usage,
Greg D.
PS: Here’s a good one… Pepper is my favorite Queen Girl Doggy. We had here for the last 13 years and she’s here. We had and have Peppers Dr. Les (I always had him for 20+ years & like a “good friend”). She (Bird-Ball - the Baseball Nut) got seizures when started as 3 year old. Her meds didn’t help, but a week after my anti-seizure meds, Dr, Les sent her the same meds, bey it’s way less as. 50 yo old doggy. Name LEVETIRACETAM -> Keppra XR; twice a day. Her id 500 mg -er day. Another 3+ years without seiners!
-
Like -
Helpful -
Hug
1 Reactionmdk1960, this post is a brave one. You worked hard to move yourself through this , to put as much distance as you possibly could, then snuff out of the long term affects of your younger, sadly harsh reality. 🫂 and kudos to you.
I really like your suggestion of researching the providers. I was in an HMO for so long and I couldn't afford to get help outside of the HMO system. Could you please share your suggestions for researching providers. How do I weed through the reviews, which are often only the best ones, the negative ones get buried. Example of one of my many failed attempts. I sought out a therapist, reviews and her own "knowledge " statement for dealing with MDD,PDD, BPD. She said she definitely could help me...until our long relationship, of 3 visits abruptly ended, by her, "I don't know how to handle you, with your self harm. I have never seen this kind of behavior in anyone." I allowed that to reinforce me as a useless idiot and nosedived straight down. I got fired as the patient. I guess there is a first time for anything.
Yes, I will read it. Thank you for sharing it with me. It may be awhile though. I have somehow managed to be diagnosed with HSV-1 and a MRSA issue with in 2 weeks of each other. The drs. will not discuss any of this, so I can understand it. They act like, if they talk about it, they will get infected by me. So, I must stay away from drs. right now, or I might just go off the rails. ShelleyW
-
Like -
Helpful -
Hug
1 ReactionPlease get medical care for the mrsa asap. I got bacterial meningitis of my brain in May 2014 from chronic sinusitis. The organisms were pseudomonss and mrsa. I had a craniotomy to remove access left temporal lobe. I was on life support multi organ failure in medically induced coma etc. I had 5 years of allergy treatment after recovering. 13 arms of my immune system were deficient. He told me this was not your fault. Good advice about the components of a successful doctor visit. For me personally I checked for violations with the medical boards. I checked their education etc. For therapists it has been harder. The fact a professional was dismissive of you breaks my heart. I just began with another therapist recently who has a masters . So far so good. I would also check with the hospital my physicians were affiliated with for info.
-
Like -
Helpful -
Hug
2 ReactionsI apologize for giving such forward advice for care for the mrsa. It is in your hands. I feel strongly about taking care of oneself. Plus I hope my illness could help someone else.
-
Like -
Helpful -
Hug
2 Reactionsmdk1960
You are so sweet to be passionate about passing on helpful information regarding MRSA.
I could REALLY use your advice on how to proceed, when the drs. Involved don't agree with each other and NONE of them believe I have any form of MRSA in me, even though I have blood tests. I'm exhausted from doing research and getting nowhere. Any advice will be greatly appreciated and you can't get too forward, or too passionate with me. ShelleyW
gregd1956, ouch!! The bicycle accident is awful. In your second paragraph, are you talking about your experience or asking me questions about my jerking issues? My brain definitely misunderstands a lot. I, too had 2 recreational accidents in 2005; ocean threw onto a lava rock 2x, and I had a whiplash in a snow tubing trip. I wish the whiplash that felt like my head would fall off, I wish it had. Because these two things completely ruined my life and changed a big part of my personality. I am sure my jerking experience was related to them as a manifestation of essential tremor. I am glad that your seizures responded well to the medications. Thanx, ShelleyW
mdk1960, if you're willing, what meds have helped you?
Shelley