I thank those of you that have been with me on this 7-year hellish journey. There are so many things happening in our medical realm it will be impossible to contain them all in this short post.
In retrospect, it may be that the best decision that my support group and I made was to walk away from all our private doctors and dump all our eggs in the basket with the Veterans’ Administration. No big fireball there. The VA operates as a team and private physicians do not. The modus operandi of the private physicians is absolutely fine for simple to moderate and maybe even severe routine conditions. The key word is routine and familiar conditions.
After 7 years of wading in the fires of hell, we seem to be reaching shallower waters, with the Grace and Glory of God. As the team of doctors near a diagnosis, the only thing that is clear is that whatever this evil is, it is an ultra-rare genetic neurological condition. We have been through so many tentative diagnosis over the years my support group and I have little faith in names. We know the symptoms. We know the progressions of these symptoms as an episode begins and then fades away, leaving us to recover.
The latest targeted diagnosis include myasthenia gravis, episodic ataxia type 9 and Huntington’s disease. The most substantial actions the physicians have taken are:
- Fresnel Lens in left eyepiece of glasses: My left eye doesn’t play well with others. The Fresnel lens helps force my left eye to look forward and reduces the vibrations. The lens reduces the clarity of the vision of my left eye. More significantly, the pain of the vibrations is reduced. My ability to read has greatly increased. And I’m doing a lot.
- The identification of seizures having a causal relationship with my muscle spasticity (tightness). After seven years of extreme pain, the addition of an anticonvulsant has greatly reduced the violent constrictions of my muscles tearing their associated capillaries.
- Adding Albuterol to my daily regimen to open the airways. The pectorals, intracostal (rib) muscles and diaphragm all work together to prevent me from moving air during an episode. The use of Albuterol maximizes the lungs ability to process whatever air I can move into them.
We are in recovery mode even as the disease progresses. My team and I are exploring my abilities and constitution along with the pitfalls. My wife and I were able to work in the garden together for half a day. I now have to rest and heal my muscles for a few days from the damage I inflicted on them. But, much of the pain I am going through now is from me pushing my muscles.
The disease is still ticking along. Something called channelopathy plagues me. Channelopathy is when the ions don’t travel properly along the neurological pathways of the brain, spine and through nerve endings. When an episode sits in, I have almost no warning. My ability to speak and the random movements of my limbs are the most telling outward signs. Increasing tinnitus and auditory hallucinations are the most telling inward signs of an oncoming spat with the disease.
Comprehension, emotions, logical thinking all just vanish or are reduced during this time. For years my wife and I have been banging this drum and finally we have a team that listens to us. Since the disease is episodic with no discernable triggers, there is often no physical evidence of the disease when you are in front of a doctor. However, our greatest leap forward was recently, when I did have an appointment when I was on the tail end of a 36-hour episode. The neurologist ordered a number of tests and we are making significant progress in doing battle with this bastard, whatever it may be. Putting a name on this evil would open avenues to better targeted treatments. But, for now, we are just going to soldier on.
Thanks for reading,
Jay C. “Jazzy J” Theriot