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elke
11-14-2007, 07:53 PM
I'm going through a hard time right now and could use a little support. More specifically, how do you go about forgiving your doctors after they told you for years that you were not sick and that your symptoms were psychosomatic?
You see, I started feeling ill after my first year in medical school. It started subtle with some balance problems and increasing headaches and then eventually morphed into profound fatigue that left me thinking I would need a motorized wheelchair. By the time I reached my clinical years- the most crucial in medical school in terms of making or breaking your career- I was so ill that I kept failing my surgery rotation, which is a gruelling 80-hour a week experience where you have to get up at 4 am to go round on your patients and spend long hours in the operating room. The school had me repeat it 3 times and had me repeat parts of it I had passed. I recall spending almost all day holding a retractor and then they still failed me, while I was suffering from profound migraines and fatigue and balance problems. Surgery's supposed to be a 2 month rotation, and I did 6 months, which made me even sicker. Medical school is supposed to be 4 years. I took an extra year on purpose but then it took 7 years all together to finish.
In the mean time, while I was going through this, the doctors at the student health center said that since all my labs and studies were normal, there was nothing wrong. I saw numerous neurologists at my school, who accused me of making up my symptoms and fast reflexes, etc because I was a medical student. They wrote in my chart that my symptoms were from emotional issues. There was only one neurologist out in the community who believed me and even wanted to try steroids, but without a diagnosis, I was reluctant to take them. She thought maybe I had a hereditary ataxia, demyelinating disease, autoimmune disease, but could not tell me what it was I had. So the primary doctors in the student health center all poo-pooed her notes and her assessment that I was ill, since all my labs were normal. They kept referring me to counseling. And the counselor thought it was funny that I thought I had a neurological disease.
In the mean time, as I mentioned above, I kept having a hard time in school. I faced a lot of what I think was discrimination. The psychiatry attendings all asked me how much paxil I was on and wrote down that I looked "anxious and depressed" on my evaluations when in fact, I felt unsteady on my feet and profoundly fatigued. To make things worse, after I kept failing the more difficult rotations, the student progress committee recommended that I see one of the school's shrinks for my "depression"- even when I told them I was being worked up for MS, etc. As school progressed, my symptoms got worse and I even had to use a cane during my last year of school. At least after I started using the cane the residents and attending stopped laughing at me, but some still told me I was "too slow". I still feel hurt by all the eye-rolling and snickering. I have trouble trusting people now.
Well, after I graduated medical school, despite feeling run down by what had happened, I decided to trust my gut, not listen to the numerous doctors who told me I had a psychosomatic condition and I aggressively pursued a diagnosis which included seeing two of the kindest neurologists at my school, one of which was a movement disorder specialist.
As it turns out, in April I was told I have a rare disease called Hashimoto's Encephalopathy. It is treatable with steroids if caught early enough, but I'm beginning to realize that I am having relapses even after my steroid pulse.
My disease is a weird one- a rare complication of Autoimmune Thyroiditis. Most doctors have never heard of it. It is only now beginning to be included in the neurology textbooks. It's diagnosed by testing thyroid antibodies, even if the TSH is normal. Doctors do not typically check thyroid antibodies unless your thyroid hormones are abnormal. Despite numerous complaints of hypothyroid symptoms over the years, my hormone levels always tested normal. In fact, they were checked over six times while I was a student. In the mean time, I had gone in complaining of elevated cholesterol and triglycerides, hair loss, dry skin, low blood pressure, coldness, etc etc. All symptoms of low thyroid. I was told that since my TSH was normal, my thyroid was okay. I have since learned that it is full of tiny nodules from the autoimmune destruction.
I'm afraid that my experience has left me very bitter. I went into my profession with very good intentions, and now I am left feeling that, while there are some very good doctors out there who care, most are insensitive jerks who are very difficult to work with. Part of this stems from what happened to me personally as a patient and a student, and the other part comes after observing doctors being arrogant to their patients and each other when I did my rotations. I was made fun of for "caring too much" numerous times. I was told that I would need to be faster and less kind to the patients.

If anyone has any words to cheer me up, I sure could use them right now. I know I'm supposed to cheer myself up, but am having a hard time with it. There's only so much my family can understand about my illness, and they do not know how much of a struggle it is from day to day, or the depth of the humiliation I suffered as a medical student with an undiagnosed neurological condition.

moose53
11-14-2007, 08:42 PM
Well, ((((((Elke)))))),

I've dealt with good doctors and bad doctors. I've fired the bad ones. The good ones usually get a promotion and move on to bigger and better things :cool: Every single doctor that I have 'liked' has taken a promotion and moved on :rolleyes:

The doctor that operated on my Mother was sued successfully for malpractice out in California. She told me about that but not his name :( I let him perform a colostomy on her -- UNBELIEVABLE :mad: Incompetent. Screwed-up surgery. Bed-side manner of an ***. He told me it "didn't matter" that he had done the surgery wrong because she was dying anyway :mad:

Elke, you can take yourself into a downward spiral and keep re-living and re-living what was done to you by incompetent, uneducated, uncaring doctors OR you can kick *** and SHOW THEM that the best kind of doctor is a caring doctor.The doctors that are respected by patients are the GOOD doctors. The doctors who are included in the nightly prayers of family members are the GOOD doctors. Maybe prayers and respect don't add anything to the bottom line on the paycheck. But, they do a heck of lot to ensure that you're living your life the way your Mother taught you. And they'll pretty much guarantee that you get into Heaven :D

I had a HUGE conversation with my Brother about this once -- when I was working for State government actually :rolleyes: -- how do you hang onto your self-respect and your morals and your SOUL when those around you don't care -- or worse, when they do harm with their attitudes?? You do the best that you can for everyone that you come in contact with. You report those that are actually harming people with their attitudes.

You prove all the naysayers that were critical of your skills and your techniques WRONG!!

The world will open its arms to enfold someone like you who has a moral compass and REALLY CARES. The others might get the dollars but, they DON'T GET THE RESPECT.

Count those years as a lesson from The Universe in determining exactly what kind of doctor you will become. You know, Elke, I believe that The Universe keeps putting the same situation in front of us usually because we are not paying attention to subtle cues about what's expected. In your case, I believe, these repeat circumstances were put in front of you to ensure that you had the STRENGTH to keep your soul intact even though those around you were selling theirs. You have to figure that you've got TONS of experience now that has tested pretty much all aspects of your life. And you kept your belief system and your soul intact -- Elke, that is pretty amazing!!

Recognize the strength of character that you have. And recognize the value that you will be bringing to the lives of others that need you. YOU ARE AMAZING and all those jackasses that you left in the dust, in the past, can have their pathetic little soul-less lives. You're gonna CREATE MIRACLES :D

BIG HUGS.

Barb http://img.photobucket.com/albums/v90/moose53/MINIS/PLANTS/friaresmilley.gif

elke
11-14-2007, 09:50 PM
Thanks, Barbara!

You are so very kind and inspirational.

-Elke

houghchrst
11-15-2007, 10:53 AM
Hi Elke, welcome and yeah what she said. I too am having a rough time with the doctors but I have a feeling this is just the beginning. I am glad that you finally got a diagnosis though not that diagnosis, now you can begin to heal and dwelling on the bad keeps you from feeling better and staying strong. You need your strength. Don't let those feelings control your health. They will if you let them. Those doctors will pay for their arrogance eventually so let it go. There is nothing you can do but be the best you can be and help somebody who like you needs help and understanding.

JAVISI
11-15-2007, 12:55 PM
Elke,
I am a Registered Nurse, I loved my job! I worked in the ICU. I thrived on the adrenaline rush! The ER was so much fun for me to work in. I too began to become unbalanced, I developed nystagmus and hyper reflexed. The first Neuro I seen diagnosed me with temporal lobe seizures. I was positive it was not that. I tried many different meds but none of them worked. He finally told me that their was nothing more that he could do for me!

I was scared because I knew in my heart that I had a neuro problem. I was so afraid of losing my job! The one thing that I worked so hard to acheive, that I could take pride in! My momory began to slip and I eventually went on family medical leave. Now I lost my job and no one could give me answers. Many Dr's just wrote me off as it being emotional too! That really hurt and it still does! In Nursing school we were taught to listen to the patient, they know themselves better than anyone else!

Personally I think a lot of the Dr's did not know what was wrong with me so it was easier to write me off as a mental patient. I finally went to a teaching hospital and went to a neurologist that specializes in seizures, He told me that I did not have epilepsy, I have these abnormaL brain waves all of the time. He sent me to anothere Neurologist. He was inquizative and interested in my case. He ran many tests. I really liked him.

My SCA14 has a mutation in it and all of my symptoms follow that path! I also hyave myoclonus. Finally some answers. I was still angry at the other Dr's didn't want to take the time to figure this puzzle out. I didn't want to lose my job but in the end I was and have been unable to go back to work.

And yes, I am not afraid to admit it, I AM depressed, who wouldn't be but it is situational, It is because I am mentally ill not but because I have lost so many things.

I am working through this by coming t5o this site and help others, even if I don't know what is wrong at least I can be a sounding board, a friend ect. So this is my therapy. It has been over 3 years since I became ill. I have come to realize that I only have so much time on this earth and why waste it being angry at all of those Dr's, I am sure that they don't even remember me! The only one that I was hurting was my self! That is not to say that I don't have my days when I get mad but they come much less frequently. I wish I could take your hurt and pain away but on a positive note, your experience will make you a better DR., use it to your advantage~!

Dream Big and Reach for the Stras, Javi;)

Buttons2
11-15-2007, 01:28 PM
Elke,I'm truly sorry you've been treated this way. But I agree that having gone through all this will only make you a more compassionate & caring doctor-one that will LISTEN to patients & think outside the box.

Also,since you finally got diagnosed I would hope each & every doctor you worked with has a full knowledge now of this rare part of thyroid disease they are not taught in med school!

Your experience is actually rather common to laymen,many of us have gone to different neuro's seeking an answer. Being told it's "all in our head" is all too common,especially for females.

In my own medical nightmare I fought 8 yrs to get even a simple TSH test. Last month I refused another test & actually sat right there & told the doctor he gets high points for agreeing to order Free3 & Free 4 along with the TSH,(last year), but he flunked by not ordering the COMPLETE testing available. In my mind (from research), the TSH is a waste. I also added further insult to him by telling him straight out he wouldn't have a clue how to treat me even if an abnormal test was finally apparent! (If he fires me now I could care less).

I had also asked for a homocysteine test for years & was told not necessary.

I've had many years of nightmares with different docs. Having YOU join the profession might just give your life more purpose than you can imagine! For one thing docs hate that patients are so well informed today. We seek answers,we find people with similiar symptoms & learn from them. We research every single drug being pushed at us. We refuse many drugs & let them know why. We try to share knowledge of nutrition & vitamins (especially B12).

You have an opportunity now to get the word out,perhaps get your experience written up in one of those "journals" the doctor's seem to think are bibles of medicine-not!

Don't allow the bitterness to overcome everything you have worked so long & hard for. Instead,turn this around to your benefit!

We look forward to getting to know you! Kudos to you for hanging in there,you're a fighter!

Best of luck for a happy & productive future!
Buttons

Tootsie
11-15-2007, 11:35 PM
elke, thank you so much for sharing your story. You can never know just how much it means, to those of us who have puzzling, and frustrating symptoms, that even a respected, knowledgeable and educated member of the medical establishment, has been treated so rudely and with such disrespect. Here we thought that we were the only ones!

It is fortunate that you finally have a diagnosis. You might consider writing a cover letter, along with all the necessary medical data, and send it to those doctors who ignored, made fun of you and made your life so miserable during your years in medical school.

I am sending you a personal message also. Cheerio.

elke
11-26-2007, 10:11 PM
Thank you everyone for your thoughtful comments. I am so grateful to all of you. I am doing a bit better. I really appreciate your kind thoughts. I'm thinking of perhaps meeting with the new dean of the medical school after the holidays and discussing what happened to me- so that they can learn from it and so that the medical students learn how to interact effectively with undiagnosed neurological (and other) patients. I think it's important for doctors to take their patients symptoms seriously- even if all the labs come back normal at first. It is very harmful to be told your symptoms are psychosomatic just because you don't yet have a diagnosis, and the school needs to learn this perhaps. I also think it's important for doctors to protect their patients ADA rights even if they don't have a diagnosis yet. Somehow, the school isn't teaching these things yet, but maybe I can effect a positive change.

moose53
11-27-2007, 12:22 AM
((((((Elke)))))),

I think that's a fantastic idea http://img.photobucket.com/albums/v90/moose53/MINIS/CONGRATULATIONS/JC_Hi5.gif!!

'Things' continue on as always unless someone highlights WHY they shouldn't.

You're in a perfect position to demonstrate WHY the status quo is NOT GOOD ENOUGH.

I had a student dentist once -- three months to go 'until graduation. I spoke to the Dean and said that the student dentist was 'nice' and he had 'potential' but he wasn't ready. They held him back -- kept him from graduating for another year. He'll be a good dentist because of that extra year of study.

Elke, BELIEVE that The Universe is guiding your steps now. Pay attention to the subtle cues that you see around you and be guided by them.

It brings a smile to my face to know that there's going to be another caring, supportive person who really CARES FOR her patients.

BIG HUGS. Enjoy the holiday season. This is a perfect time of year to plan where you go from here. The energy that's around now (the healing, blessing energy -- not the shopping energy :p ) is exactly what you want to surround yourself with).

Barb http://img.photobucket.com/albums/v90/moose53/MINIS/HUGS/holding-hands.gif

houghchrst
11-27-2007, 10:21 AM
Elke, yes that is a great idea. I am really so sick of doctors that are not "user friendly" and are afraid to think outside the box. We are in desperate need of a new trend in the training of doctors that will teach them to listen to the patients and to stop thinking that they are superior. They work for us and if they remember why they got into the medical profession in the first place then they can be wonderful doctors. I am sure that the bulk of doctors got into it because they want to help and to contribute but once the money kicks in and the stress and the politics then all the good intentions fall to the wayside. You would make a wonderful teacher. Maybe if you find your health prevents you from actively practicing then you could consider teaching. I am glad you are feeling a bit better.