Tag Archives: Misdiagnosis

Misdiagnosis And Medications

I’ve taken a break from everything lately. I’ve been dealing with someone pretending to be “Steven Tyler” who somehow got my cell phone number and was using Google Hangouts to repeatedly send me messages. I didn’t even know what Google Hangouts was. Then he started texting my actual phone after I blocked him on the Google App. It took weeks to get it to stop. I still don’t understand what the end game was. He wasn’t asking for money or anything like that it was just creepy. I have to say it triggered a lot for me. Unfortunately this wasn’t the first time. Anytime an actual verified celebrity has liked a comment I’ve made or followed me this has happened. So I will try not to make any intelligent comments that musicians find interesting. Thank you very much stalkers.

MISDIAGNOSIS

I’ve had my fair share of doctors who have misdiagnosed an illness I have. I also had many doctors miss a diagnosis of Bipolar Disorder for 20 years. What makes me angry is my Dad. A few years ago he was having severe headaches and went to the ER. The doctor did an X-ray of his head and told him he had Temporal Arteritis. He was put on a high dose of Prednisone for a year. It was hard to get him off it. He became a different person. He was aggressive, moody, confused, unsteady on his feet, and looked bloated. It was the aggression I had a hard time with.

The only way to diagnose Temporal Arteritis is to have a biopsy, you can not tell by looking at an X-ray. My Dad refuses to believe anything I tell him. When his headaches started again recently he called his GP and asked him for Prednisone. The GP gave it to him. I’ve been staying in my room ever since.

His blood pressure has been dangerously high after dialysis. 208/140 high. They can’t stop his bleeding when they take out the needles. This is all from the Prednisone. Which by the way actually says to tell your Doctor if you have: Kidney Disease, Heart Disease, High Blood Pressure, Cataracts, Stomach Ulcers, a History of Stomach Bleeding, or Depression.

He has all of these! He has mesh in his stomach for an Aortic Aneurysm that’s already been repaired once!

Are these people stupid? I know the Hippocratic Oath isn’t legally binding but do they care if they kill someone?

The other day the dialysis center wouldn’t give him his treatment. They said his fistula was clogged. A Doctor came over and asked what was wrong. He looked down and noticed there was knot in the tube. He fixed it and went about his business. They were going to send my Dad for surgery he didn’t need because there was a kink in the tube that no one noticed!! And the Head Doctor acted like it was no big deal.

I read a study today that said a patient has 42% higher chance of a misdiagnosis if the Doctor thinks they’re “difficult” or “needy”.

They suggested patients be more positive when meeting with Doctors for the first time so this doesn’t happen.

Hey, sorry if I ask questions or cry because I’ve already been to 5 other Doctors who couldn’t/wouldn’t help me but let me make this more comfortable for you while I’m literally dying.

Here’s and idea, DO YOUR JOB! No one forced you to go to medical school you chose to go. If you chose to go only for the money than you should quit now because times have changed.

One more thing. No Doctor should be prescribing medications or making a diagnosis they are not qualified to make. Dr, Drew isn’t a Psychiatrist so he shouldn’t be making psychiatric diagnoses. A General Practitioner can’t diagnose Conversion Disorder. You need a Team to do that. A Psychiatrist, a Neurologist, and a doctor who specializes in Movement Disorders.

Your Psychiatrist should also have a degree in Psychopharmacology so they know how medications work, which ones work for different disorders and which only make them worse.

Advocate for yourself because no one else will.hippocratic

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Bill Clinton And Tremors

I was catching up on the “news” this morning when my I spotted this little gem “Bill Clinton’s Hand Tremble Raises Health Questions”. First, I think they meant “Tremor” not “Tremble”. Second, Mr. Clinton has said in the past his hands tremor as a simple condition of aging. He also denied having Parkinson’s Disease.

Let me tell you why this annoys me. This subject shouldn’t even be a headline and has nothing to do with the state of his cognitive skills. He’s still an intelligent, competent man.

As people get older, many develop tremors. There is a genetic disorder that happens to many called Essential Tremors. Essential Tremors typically involve the arms, hands, head, vocal chords, and sometimes other body parts during voluntary movements like eating, writing, or dressing. It’s often misdiagnosed as Parkinson’s Disease.

One of the main differences between the two is with Parkinson’s the tremor is usually constant even when the affected muscle is at rest. With Essential Tremors the tremor only worsens with your intent to use that affected muscle. The more stress, fatigue, low blood sugar, caffeine and other outside influences in your life you have the worse they will get.

I was diagnosed with Essential Tremors at the age of 37. That is extremely young for an Essential Tremors diagnosis. The other problem was no one else in my family had them.

A few years went by and I received another diagnosis of Conversion Disorder. Supposedly that was causing the tremors and a newly developed stutter.

Since these diagnoses my father who is 72 has started to have tremors. We never thought about his side of the family. His father had passed away at an early age so we wouldn’t have known if he would’ve developed tremors. Essential Tremors usually do not start until you are in your mid 60’s or later.

I have also learned that Celiac Disease, an autoimmune disease not an allergy, can cause early onset tremors. I have Celiac Disease. Which if people looked at it like an autoimmune disease NOT AN ALLERGY we would all be a lot better off.

I thing the media needs to educate itself before writing an article specifically dealing with medical issues. Do you not have to take journalism classes anymore to be hired by a well known publication? Rolling Stone did have Sean Penn write his story so I guess not.

So as not to be a hypocrite this is a blog. I do not get paid for my thoughts and opinions. No one takes what I say as fact because a well known publication is sponsoring me. I am not a journalist. I don’t know what I am. I do know I am sick and tired of the lying and scheming and self-righteousness I keep seeing everyday. So I ramble and spew until I feel better.


Why I’m Beginning To Dislike Doctors

When I first started this journey of finding help I was 17 years old. It took until the age of 37 to get some of the correct diagnoses.

Too many doctors assumed that because I am an Alcoholic that my tremors were being caused by my sobriety. They also assumed my cognitive problems were due to drinking also. A few doctors said the longer I was sober the more my cognitive skills would improve. They didn’t.

I was referred to a Neurologist by my General Practitioner when my tremors first started at 35. He diagnosed me with Essential Tremors. This is a hereditary condition that no one in my family had. He had my file and history. He said one thing that helps is to have a “drink” when they get really bad and you’re in a social setting. I told him I’m a recovering alcoholic. He said “You can’t just have a glass of wine or something?”. I thought for such an incredibly intelligent person he sure was stupid. I didn’t go back to him.

Then I was finally diagnosed with Bipolar Disorder. The problem was none of meds worked the way they were supposed to. So after years of my sister telling me to get tested for Celiac Disease I finally did. I resisted previously because I didn’t have the usual symptoms like she did. I didn’t know it caused malnutrition and malabsorption of meds. I didn’t know it interferes with your cognitive skills and can cause tremors and stuttering. So I had the blood work and biopsy done and both were positive. My immune system was severely compromised. My Psychiatrist sent me to another Neurologist.

This one diagnosed me with Conversion Disorder. I didn’t want to believe him. I spent a great deal of time convincing myself it was the Celiac.

There came a time when I finally had to admit he was right.

My stutter and tremors would get worse under stress or if I was upset. I startled easily. Hearing loud men’s voices would set it off, if I felt threatened it would start, if I had a bad memory, anything that was emotionally stressful or disturbing for me would do it. A second opinion confirmed it.

Now with my kidney failure and biopsies the doctor didn’t tell me everything. I got the report sent to me of the lab work done by the Hematologist and results of the biopsies.

No one said there abnormalities of the organs in my pelvis and the soft tissue of my pelvis. No one mentioned I tested twice for Monoclonal Gammopathy or Lymphocytopenia. Also something listed under Immobility Syndrome. A disorder caused by an infectious process involving the skeletal muscles that causes muscle weakness and pain.

I have had problems with my white blood cell count for the last few years. I was diagnosed with Leukopenia. A lot of this has to do with your bone marrow. The Gammopathy and Lymphocytopenia are linked to Multiple Myeloma. So they have been looking in the wrong place for the cause of my kidney failure. All of these things are linked to kidney problems. The Monoclonal Gammopathy is a specific protein found in certain people that has to be monitored because if it isn’t you get problems like I am having. Good to know. So I will not be getting a second opinion from another Urologist. I’m going back to the Hematologist who I didn’t know had called and wanted to see me. He also told my Urologist I needed to see him. My Urologist said nothing except he wanted me go see one of his friends.

I’m truly disgusted with it all. The misdiagnosis, Medicare, my father’s treatment by the insurance company and Medicare. It’s enough to make you give up. Maybe that’s what they want so they don’t have to pay. Make everything as difficult as possible so you don’t bother.

They didn’t count on me. It might take me longer to read and understand everything but I will find a way for my father to regain some of his dignity back. I don’t usually fight for myself, but for my family I will fight with all I have.


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