Cytoxan Infusion for Myasthenia Gravis, Fourth Infusion Report, December 2, 2011

The cytoxan infusion itself went very will with no side-effects on Friday, December 2. I still had a couple of "bad" days on Sunday and Monday of the following week, but nothing too bad.

Let me update my current condition after four cytoxan infusions. Things have not changed much, except the progression of disease has slowed.  Slowing the progress is great improvement for me!  Remember, I have Myasthenia Gravis and whole-body Small Fiber Neuropathy.

Condition as of November 29, 2011

Breathing: This continues to be a major problem and is debilitating.

Mental Issues: I am occasionally having trouble choosing the right words to say or selecting the correct word for objects. I also am not "sharp" in my thinking right now. I have become very emotional at times--this is not normal for me.

Vision: My vision is still worsening. If I look straight ahead, my vision is basically OK. If I shift my eyes in any direction, I have double vision. Moving object blur easily. I do not drive much at all now. Vision disturbance and eye pain are a constant issue.

Muscle Jerking: I have lots of involuntary movement in my arms and legs. They jerk on their own at times. I have a lot more leg cramps than ever. My sleep doctor diagnosed Periodic Limb Movement Disorder. This has really increased over the last several weeks. This is becoming a very bothersome issue for me.

Tingling: More tingling and numbness over almost my entire body. Major pain area is in my knees to feet on both legs and forearms to hands on both arms. I have had sharp, burning, electrical pain in the outside of my right thigh. Pain is excruciating.

Tremors: Tremors seem to be increasing in my arms and legs.

Aching: My total pain level is increasing, both burning and aching.

Needle Pricks: I still do not feel needle pricks over almost my entire body.

Sensory Issues: I do not feel hot or cold immediately. I can burn myself easily. There are areas on my body where I do not feel light sensations such as "blowing on my skin."

Exhaustion: I am not as exhausted from Chemo as I was from PLEX. Any activity quickly exhausts me because of breathing issues.

Weakness: My strength quickly fades with use.

Walking and Balance: I can walk short distances, slowly. My balance is off occasionally. My legs feel heavy.

Autonomic Nerves: I still have varied BP, pulse, etc.

Hypohidrosis: I have greatly reduced sweating and basically only sweat on my forehead. I may have develop some very light sweating under my arms, but it is difficult to tell for sure. I feel like I might be sweating at times, but moisture is not present.

Body Temperature Regulation: I can overheat if I am not careful. Strangely enough, I still feel cold but the cold does not really bother me. I do not think my body is registering the cold temperatures properly.

Photo-sensitivity: Sunlight, or bright spot-lights, make my face feel like it has been sunburned. I avoid sunlight.

Orthostatic Hypotension: I still occasionally get dizzy when standing.

Tenth Cranial Nerve Palsy: I was diagnosed around 2005 with a partial CN10 palsy that effects my throat and gag reflex somewhat. I do not feel hot or cold on the interior left of my throat when I swallow. I have not had any trouble swallowing, but I do not feel the temperatures.

Voice: My voice still gives problems with extended use.

Jaw/Temple Pain: My jaw muscles hurt when I eat anything hard. I notice it most in the morning when I have not had my Mestinon. The more I chew, the more I hurt. Swallowing liquids is becoming difficult at times.

Whole Body Involvement: My entire body is effected.