Essential Tremor - The other disorder I have that no one has ever heard of.

Over 2 years ago I was at a business meeting and, when I tried to shake the other man's hand I felt my hand shake. I thought it was weird, and hoped that he did not notice it. A few days later, my right hand started to shake every time I lifted it up in the air. It did not go away. Actually, it freaked me out. No control of my hand unless I relaxed the muscles. I made an appointment with my GP.

The doc gave me a traditional neurological exam and told me he thinks I have Essential Tremor (ET).  He scheduled me for a Brain MRI. The MRI came back normal, which is normal for ET as well. The MRI ruled out other problems, like a brain tumor, as being the cause. I was referred to a neurologist who confirmed the diagnosis and put me on Propranolol to control the tremors. It works pretty well for me. Most people don't notice my shaking.

Essential Tremor is in a group of diseases known as movement disorders. It is the most common disorder of this group - approximately 10,000,000 Americans have this disorder (compared to 600,000 for Crohn's Disease). Yet most people have never heard of ET. Other diseases in this group are Parkinson's Disease (thanks to Michael J Fox and Muhammad Ali - much better known than ET), Restless Leg Syndrome, and Dystonia.

Since the start of ET's appearance the tremor has become worse in the right hand, and spread to my left hand, then to my legs, and most recently to my head. I have to use either very fat pens, or a ergonomic pen called the PenAgain to keep my right hand from shaking while i write. Using a computer has become much more of a challenge. People with severe ET often use voice activation software so they can dictate to the computer instead of type. Some also use special mouse's   that are programmed to ignore the movement due to the tremor. I am not at that point though.

ET is often confused with Parkinson's Disease. The differences are this, the Parkinson's tremor happens with relaxed muscles. (I would really hate shaking while at rest!) Parkinson's also leads to stooped posture when walking, which does not happen in ET. The ET tremor happens when the muscle is active - the exact opposite time as Parkinson's resting tremor.

I have wondered if my Crohn's disease could have led to the ET. I asked my Neurologist that question and she just dodged around the answer. Maybe she doesn't know. I wish doctors would just answer honestly when they don't know the answer. It would make things so much easier.

Insurance Battle

Since I had my surgery my G.I. Doc has been attempting to get me on Humira. My insurance company has refused twice to approve Humira, and it is beyond ridiculous. They claim I have not been on two other approved meds and failed them before. I have been on Welchol (for Diarrheah), Flagyl (inflamation of bowel), Cirproflaxaxin (inflamation of bowel), Loperamide (Diahreah). Cipro worked in getting pain relieved, but none have worked long term. The other reason for declining Humira is they don't consider me a severe case. This although I had surgery to remove parts of my bowels in October 2010. The surgery is done only on severe cases of Crohns.  We appealed this decision and won on the severity issue, but not on the use of 2 or more meds. I was put on Sulfasalzine for 2 months (which made me feel worse than when I had no med). Again they declined approval of Humira.

I have now been put on Asacol HD, which my G.I. Doc said last week was like "Pissin in the wind."  Asacol is a good med for mild to moderate crohn's disease, not for severe cases.

I have filed a complaint with the state insurance department. We'll see what happens from that.

Having the guts ripped out of me.

After all the stuff that happened to me last year, I had my guts ripped out of me.

Well, it was done through surgery. I had the illeum, about 2 ft of small bowel and 6 inches of my colon removed. The surgery took place October 12th, 2010. It was a full blown surgery, could not be done laproscopically. I had a large Crohn's mass that needed to be removed. Some of my small bowel had to be stretched out, it was folded up like an accordian.

I think the surgery was the best thing I could have done. Recovery took about 6 weeks.  Since then I have entered the next phase of my crohn's journey, maintenance, and ........ The dreaded insurance company battle!

What has caused all the pain.

My pain back in June was caused by a partial obstruction in my small bowel. Crohn's causes sections of the bowel to become inflammed, and one part of my bowel was almost entirely swollen shut. This blocks food from traveling down the digestive tract, and is really painful. My doctor has told me that the pain I have had on those ER trips was as bad as labor pains.

I was referred to Dr. Jeffery Poole, a G.I. doc at Davis Hospital. Dr. Poole gave me every test under the sun. I had several blood tests, colonoscopy, upper endoscopy, and a barium test. I also had tests where you breath into a bag and they take chemical readings of your exhaust. 

The barium test was the kicker.  I set the Davis Hospital all time speed record for the barium pass through. This test should have taken up to 8 hours. Mine lasted 15 minutes. Yes, I had a fistula that was bypassing most of my small intestine. My next step was surgery.

I wish my previous docs had been more aggressive. I think I could have avoided a lot of this if they had done their jobs in 2004.