Health update

          Wow, I realized I have this blog, and I haven't posted to it since 2009. I've been through a lot since then. I now know that I have an autoimmune neuropathy. It has caused my stomach to cease  functioning. I went through a tough spell of having an upset stomach that would cause me to go to emergency room for medicine and fluids via IV.  I've probably been 5-6 times in the last year.
          I tried to have a "stomach pacemaker" put in twice before realizing that my body was rejecting the device. So... now I am very careful of what I eat. I cannot eat too much, or I will get sick. Also on the autoimmune side of things, I can tell my body is having a hard time adjusting blood pressure. Anytime I go from laying down to standing, I get woozy and swimmy-headed (if there is such a word). The pain in my feet is still there, level 6+ on the pain scale all the time, more like a 8-9 at night. Well, it's good to catch up. I hope to blog more as life continues.

Electronic Art with the iPad

Check out the new tab at the top of my blog. It's called Electronic Art. I plan to post more of my original iPad artwork as it is completed. have a great summer!

A 'TRUE' Diagnosis has been found!

A month ago, I had a visit with my fifth neurologist, my first visit with Dr Jose Ochoa at the Oregon Nerve Center. They ran a full battery of tests (again -sigh-). They came to the conclusion that my neuropathy was indeed getting worse. It's effecting my sensory nerves in my hands pretty thoroughly now (no paint brush, pin prick, hot, or cold feeling up to my wrists). We also noticed motor nerve loss in my toes. I can move them up and down, but I can't flair them. They also did another EMG and saw even further deterioration of the nerves in me legs (the main nerves this time, not just the nerve ends). Finally, the doctor noticed my high arched feet and toes that were curling (hammer toeing). He said this could be Charcot-Marie-Tooth, which is a GENETIC nerve disorder. He finished the four hour exam by putting in an order for genetic testing.

The Genetic panel is back and.... drumroll.... one of the genetic markers came back positive for a genetic neuropathic condition. Now... Charcot-Marie-Tooth (we'll call it CMT) has 4 types and a total of 22 variants. There should be a couple of markers on the genetic testing panel returned to tell what type of CMT it is. Having this one marker is not very well documented, to the point that it is uncommon and new enough to NOT yet be called CMT. It is unique enough, that we have no idea how it may or may not effect the kids or anything. A year or two down the road (with more documentation) it may get categorized as CMT. The downside is it will eventually effect motor nerves in my hands and feet. CMT (because of the motor nerve issue) causes muscle atrophy and is considered under the umbrella of the MDA (Muscular Dystrophy Association).

What is good... Praise God! It should not effect brain function or life expectancy. And... though this may sound strange, but I'm grateful it's not something else. I have had many (much worse) 'possible' diagnoses. We will continue some other tests and begin exercising more. The exercise (probably swimming) will help keep my muscles toned and slow the effects of muscle atrophy.

So, your continued prayers are appreciated. And thank God for giving us (the beginnings of) an answer!

Update January 10th, 2008 (Sat)

Colin felt better after he took his trazadone on Wed. Missing a dose of that is what caused his creepy, crawly skin. He is better now.

Colin's right ankle began swelling Thursday evening and was too painful to put pressure on. We took him to the Dr. Beeson on Friday and he said he has gout. Colin is now in 2 pills 3 times a day of a strong inflammation drug. It is suppose to be better in about 3 weeks. For now he is walking with a cane and taking the new meds.

Daily Update: 1/7/2009 (Wed)

Colin has had a bad couple of days. His pain level has been high and he feels like his skin is crawling. He has had a hard time sleeping at all. He tends to kick his legs and move his body constantly as well as clench his hands together. He has missed 2 doeses of trazadone, as he was out of it and needed to go to the Dr.'s to get a new presecription. Today we picked up a 3 month presecription and gave him a dose at 1:20pm. He fell asleep about 2:30pm and as of now is still sleeping. He is also having his usual hot/cold sweats. He decided to shave his head yesterday to help with the sweats.

Daily Stats:
*Last nights pain level (6pm):
*This mornings pain level (10am);
*Other:

My Health Story

So this blog is going to help me keep track of my health history.

In 2003, I began to notice numbness and tingling in my feet. My right foot started the numbness first and has always shown symptoms before my left foot. I talked to my primary care physician (PCP) (Dr, Stephen Beeson) and he ran a few blood tests (I have no record of what) before telling me to wait six months and see what happens with the symptoms. I continued working (at Intel as an engineer, with a desk job with no access to chemicals or any environmental causes).

About a year after the numbness, the numbing continued, so my PCP sent me to my first neurologist, a Dr. David Wilkinson. He ran my first Electromyography (EMG) Study. He said result were inconclusive of any issues.

In late 2005, I began to notice a burning pain in my right foot and the numbness was now at a point of fully numbing my right foot and partially numbing my left. My PCP now ran a full blood workup with many tests including a lower back CT scan that all came back negative. We suspected a gluten allergy which would coincide with digestive issues that I had been experiencing for many years. We did full diabetic workups, a "Small Fibre" nerve test that was patented test sent to somewhere in Massachusetts, vitamin deficiency tests, and several other tests, but all came back negative. At this time I also began taking Neurontin and trazadone.

At this point I was officially diagnosed as Idiopathic Peripheral Polyneuropathy. I was also seeing a new Neurologist, a Dr. Max Duncan. He seemed like a good doctor, but his specialty was more strokes not neuropathy. He was not very helpful.

The paing progressed, and my PCP referred me to Dr Navnit Jayaram at Pain Management Consultants, Inc. They began my first use of opioid pain treatment.

To be continued...