Found a doctor who said all my other doctors were WRONG!

Charli

Charli

cool little "title"
Due to Grave's Disease I've spent thousands of dollars on doctor visits - 4 General Physician, 1 Endorcrinologist, 2 Phsyciatrist, 1 Neurologist, 1 Nathuraopathic
and so not having a job while I'm sick means no insurance and now out of life savings so I had to go to free clinic.

Nice thing about Santa Monica is that everything is nice here, even their free clinics. So I went to see Psychiatrist who volunteers once a month outside of her
own private practice to get drugs for insomnia (brought on by grave's, I was a heavy sleeper before).

She did several test on me and stated:

YOU IN NO WAY HAVE ANY MEDICAL ANXIETIES DISORDERS WHATSOEVER and should not be on any anti-anxiety medication.

Thank you! I've known this all along. She also stated that I should never have been prescribed half the medication given to me.

FINALLY!

A doctor who is able to tell me all those other doctors got it wrong!

Doctors are prescription happy as they shake hands with pharmaceutical companies which send them on free conventions to Hawaii.

What's wrong with me? Acute Graves which is messing with my electrical system - that's it! Neurons are whacked.

But I was NEVER anxious no matter how many doctor thought I was. I really, really don't like doctors at all.

So how many of you been prescribed the wrong pills?

Been told you have something that you don't?

Our health care system SUCKS!
 
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Good for you Charli!

I totally agree...we are an over-medicated society. I watch my parents take handfulls of pills 3 times a day....my Ex has my youngest daughter on anxiety meds...crazy, stupid stuff.
Everyone thinks there's a pill that will make everything better, no matter what it is!

Yes... some meds help...but you're right, the healthcare system sucks.

The only pill I'll ever take is aspirin.
 
Ayyyyyyy men.

I respect doctors and some of my closest friends are doctors, but man have I had to learn some hard lessons about always listening to them. Glad things are getting clearer for you.
 
I had a WTF moment last year that made me question everything about modern medicine when I discovered that marijuana is BY FAR the most effective drug I've ever taken for asthma. My wife got a prescription for medical reasons, and I took a puff just out of curiosity, and the effect was so immediate and dramatic it kind of pissed me off. Obviously I can't really use it as a daily treatment because of the other effects, but it made me realize what a scam the pharmaceutical companies are running when an "illegal" substance like marijuana is far more effective than what they are pushing.
 
I remember when it was a novel idea to get a second opinion. TV doctors had to urge you to do so and it was like, "but won't that hurt my primary doctor's feelings?" Since then, I've heard so many horror stories pertaining to misdiagnoses that I wouldn't hesitate to get 3 or 4 opinions. A local hospital here gave 2 people I know death sentences and a prognosis of a couple months to live. And both went down to Sloan-Kettering in NYC soon after. Well, one did in fact pass away but NINE years later after the local hospital gave her two months. The other, is alive and well and cancer free. When its life or death or even a quality of life issue, you simply CANNOT afford to take the first diagnosis as gospel.

Glad you are still asking questions...
 
Thank you guys.

You want to know how simple it is? Anxiety hovers on gloom, doom despair, paranoia, impending doom, helplessness, end of world, etc.

All I have ever felt since Grave's started was that my spinal column was on fire, like it was plugged into a wall and I was unable to relax or be comfortable.

They said - mediate, do yoga, do tai chi, get massages, get ancupunture... uh I've done those things for years, that's not the answer.

The psychiatrist did a few simple neurological test: Take your first finger and tap it as fast as you can with your thumb, keeping the space between fingers as wide as possible.

When I do it there is a 'pause' for no reason. She asked me to tap my foot as fast as I can. Again, another pause.

Neurons people, neurons.

I can't tell you what a relief it was to hear the actual truth about not having anxieties because never in my life have I been a worrier or anxious no matter
how hard life got for me. I also don't get upset in life, just frustrated.

Why didn't the doctors really 'listen' to me? Why?

It's been a year later and at least now, finally, I'm heading the right path - WOOT WOOT!
 
Where to start....

One of my best friends was treated for years for Parkinson's. His personal research indicated it may be Lyme disease. His doc refused to even test for that (a red flag, since their symptoms are often similar). He had it done somewhere else, and BINGO, it's Lyme disease. So not only was he incorrectly medicated for an illness he didn't have, he went untreated for years for what he really did have, with long-term consequences.

My wife had headaches for years. We went to 6 doctors in 6 months. All of the conversations were variations on:

"What seems to be the problem?"

"I have these headaches..."

"So you have stress?"

"Uh, yeah. I have a job, kids, no money and a husband trying to be a filmmaker"

"Okay, take these pills/take a warm bath/meditate/light candles"

One of them actually lied, and told her the prescription he was writing was something other than it was. But, he didn't know that my old man is a Pharmacist. So I called him and he told me it was just a muscle relaxer.

My son has Down syndrome, and we see a lot of doctors. They get one visit for us to determine whether they are actually listening to us, or just seeing things from their own POV. If they pass, we come back. If they fail, we find someone else. That happened a lot.

When I used to work for my Dad, I got used to hearing him tell patients to go back to their doctor for a different prescription (or he would call the doc himself) because they couldn't take what was prescribed due to other meds, or some pre-existing condition.

Always question doctors. They are really smart, but their knowledge is based on their education (usually from a long time ago, with some gaps on the days they missed class), and their experiences. They have limited training on meds (outside of the basics), and are often hounded by pharmaceutical reps. And, like all of us, they can be resistant to change, new ideas, or having their own assessments challenged.

It reminds me of the question:

Q: "What do you call the guy who graduates at the bottom of his medical school class?"

A: "Doctor"

Doctor's have a tough job, with a lot of responsibility. What makes it worse is a mythos (often perpetuated by patients), that they are supposed to know everything. I always thank a doctor who tells me they don't know something.

Glad it worked out Charli. Good job to keep looking for the answers.
 
The sad truth is that medical science is simply still very, very primitive. Physics has gone way ahead, and as a result, we have wonderful inventions and machines. But medical science? It's still mostly guesswork - and even for medications that work, they often don't know WHY they work. Crazy.

I can't tell you how often I or my wife get some kind of symptom - stomach trouble, or a skin condition or whatever, and we no longer bother going to a doctor. The reason? Because they pretty much never ever know what it is - so you end up wasting your time and their time, and they send you home with aspirin or the equivalent, hoping for the best. I feel like we live in the middle ages and you're going to a quack or village shaman and at best it's a placebo. No question there are genuine advances, but it feels still so pathetically primitive.

Here's to investing in science and education!
 
I am reminded of that scene in Star Trek IV when Sulu is in the hospital in 20th century California. Bones is just outraged that they still did surgery.
 
Charli said:
All I have ever felt since Grave's started was that my spinal column was on fire, like it was plugged into a wall and I was unable to relax or be comfortable. ... When I do it there is a 'pause' for no reason. She asked me to tap my foot as fast as I can. Again, another pause. Neurons people, neurons.
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I did not get this. Your symptoms went away just because you were told something different about your condition?

Jim Brennan said:
we see a lot of doctors. They get one visit for us to determine whether they are actually listening to us, or just seeing things from their own POV. If they pass, we come back. If they fail, we find someone else.
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I did not get this either. How to you determine this?
 
Cranky said:
I did not get this either. How to you determine this?
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We talk to them about our concerns and ask relevant questions. My experience is that most doctors aren't used to that. Some embrace it and see it as a patient invested in their own treatment and care. Some see it as an annoyance or a threat.

It's pretty easy to do when you are talking to them about a specific issue that you already know a lot about. There are certain things that are very common in kids with Down syndrome. There are also a lot of myths and misconceptions. When you start talking to specifics, you can gauge pretty quickly if they have experience with those issues, and whether or not they are willing to listen to what you bring to the table.

They are the experts in medical science. You are the expert on you (or your kids). That should be of some value to them if they are a good doctor.
 
Cranky - no, I was misdiagnosed with ANXIETIES when what I really have is a JITTERY and DISCOMFORT.

Anxieties are mental, jittery is neurological. I don't exhibit any MEDICAL ANXIETIES of any kind but my nervous central system has been effected greatly by Grave's which is part of the disease.

Problem is my blood levels for Graves are a normal person's blood levels for the last six months but my "symptoms"

tremors
muscle weakness
shortness of breath
jitterys

all of these symptoms are common with Graves but they should have faded once the blood levels returned to normal which was back in May.

Instead they have increased and every single doctor from the first one at the hospital to the last one I saw as an emergency said - you have anxieties.

No, I don't.

My brain is effected by the thyroid and I have either an A-Typical Grave's Case or another underlying Neurological disorder caused by Graves.

Symptoms worse - blood levels normal - neurons whacked.

Only ONE doctor got it right no matter how much I tried to tell the other doctors the type of personality I am. They spend 5-7 minutes with me, prescribe anti-anxiety drugs for the jitters and say, "see you in a month" - bunch of crap.
 
Jim Brennan said:
Where to start....

One of my best friends was treated for years for Parkinson's. His personal research indicated it may be Lyme disease. His doc refused to even test for that (a red flag, since their symptoms are often similar). He had it done somewhere else, and BINGO, it's Lyme disease.
Click to expand...

I had Lymes (I do a lot of out door stuff), it went on as a mystery illness for 5 years, the CDC'c premeters for testing only show about 50% of the cases, turns out the #1 specialist in the country (who is known worldwide) for it is in my city, 110 days of intravenious antibiotics and I was a new man. I almost died from it, I went through the whole thing for 5 years, ALS, Parkinsons, MS, on and on and on.

Glad your getting some answers Chari, I know first hand how frustrating it can be, I about gave up on the medical profession. Hang in there.
 
Thanks, Chip.

Graves affects 1% of 1/4 the population - let that sink in for a moment and you will see how 'rare' the disease is, hence the lack of proper treatment.

I think my biggest issues with doctors is how they are quick to tell you what's wrong with you and they don't "listen" to a word you say.

Here's how one of my doctor visits went:

Me - I have shortness of breath...
Doctor - You're asthmatic I'll put you on an inhaler and get you a chest x-ray.
Me -I have fatigue...
Doctor - You are anemic we will do blood work on you.
Me - my tremors have increased and I have pressure left side of brain...
Doctor -that's just your Grave's Disease, I'm not worried about it, it looks normal to me.

GAH! GAH! GAH!

So guess what? My chest x-rays came back and my lungs are great! My blood test came back and my organs and levels are normal!

And do you know what the nerve of that doctor did behind my back? She tested me for syphilis! I found out about this on my second visit to the free clinic and I made sure I didn't see the same doctor again - it was the new doctor who told me. Of course I tested normal.

BUT I WAS PISSED!

That freakin' first doctor didn't hear a single word I said. She had her set mind what things were wrong with me, prescribed an inhaler I'll never use and then wrote me off as a normal Grave's patient.

So for any of you who are sick and you know you don't feel right about the treatment you are getting,

GET ANOTHER DOCTOR THEN ANOTHER THEN ANOTHER

until you get to the TRUTH and you will know the truth when you hear it.

My personality? I fight through my pain, I go through whatever spit comes my way and I don't stay up at nights worrying about it. I fight!
My body is jittery and I can't help it. My mind is clear. No, I don't have anxieties of impending doom, but I really feel like causing some
doctors some pain about now.


***

So next step for me, waiting in line to see Neurologist which the Psychologist absolutely recommend and is going to push through.
Had a brain CAT scan and my brain is fine. Now we have to figure out why my Grave's symptoms are worse while my blood levels
are healthy.

I say I'm an enigma.

I want to go on the t.v. show "House" - lol.
 
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Charli said:
And do you know what the nerve of that doctor did behind my back? She tested me for syphilis!
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That's hilarious, I was also tested for Syphilis, it turns out Lymes and Syphilis are in the same family of bacteria and leave Spirochete's in your muscles. I was sure my crazy bachelor days had caught up to me but nope, negative, it was Lymes from a tick bite.

There are a LOT of good places to go in California, did you say if you have insurance or not?

Here is what a Spirochete looks like, millions of them wound in your muscles really hurt for 5 years :)
1264813362.jpg
 
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Chip - no insurance. I worked in hotel industry for 10 years and the one year I take off and am without insurance, I get sick.

What is ironic is the 'quality' of care I am getting at the family clinic. The doctors, except for the first one, are very, very friendly, caring and they listen.

Irony!
 
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