Status Update

Today I am feeling pretty tired and worn out. I finished up my last IV steroid treatment yesterday and started the oral steroids this morning. I will continue on those at full dose for 11 days and then ween off for the two following days. The first IV treatment left me extremely energized and even after taking a sleeping pill, I was wide awake at 3:30 a.m. I've been more tired since then, because my sleeping pills were doubled in dose for the final two treatments (there were three in all). I am also taking an OTC medication to help protect my stomach since the steroids can cause ulcers and other problems. So far I am taking everything well.

I was able to learn a little more about the initial findings of my spinal tap. As you may know, the doctor found demyelination, which, according to http://www.msif.org/en/about_ms/demyelination.html, means:

"Demyelination is the term used for a loss of myelin, a substance in the white matter that insulates nerve endings. Myelin helps the nerves receive and interpret messages from the brain at maximum speed. When nerve endings lose this substance they can not function properly, leading to patches of scarring, or ‘sclerosis’, occurring where nerve endings have lost myelin. It is these areas of scarring that give multiple sclerosis its name.Demyelination is the root cause of the symptoms that people with MS experience. When it occurs the speed at which messages pass along the nerves is slower than normal. Even when the patches of scarring caused by demyelination have healed and re-myelination has occurred, the response time of the nerve endings tends to remain slower."

I am still awaiting the finished results of the spinal tap and blood tests, and will meet again with my doctor towards the end of the month. I don't know where we go from here, but I will probably have two more MRIs done in the next 6 months or so to check on the inflammation/leisons.

As far as current symptoms go, I am generally fatigued, have occasional leg weakness (I may fall down or need to catch myself for support), frequent headaches and migrains with aggravated neurological effects due to the inflammation in my brain, and an occasional tremor in my right hand and arm. I have many bouts of dizziness and vertigo, and sometimes am even more uncoordinated than usual, meaning clumsy accidents where I walk into walls and stuff. Yesterday I walked into a wall and messed up my glasses because I hit the bridge of my nose...so, while I am usually clumsy, even this is extraordinarily out of my normal spectrum.

I don't know for sure that my appetite issues are related at this point, but I have lost 35 pounds so far, and even though the doctor thought the steroids may boost my appetite, it's as still as non-existent as ever, which means that I am still losing weight.

I'd like to thank everyone for their thoughts and prayers. It has been an extreme boost to know that so many are keeping me uplifted.