2012-09-26 Pre-PLEX Condition Assessment

I will have another five days of Plasma Exchange (PLEX) very soon. Here is an assessment of my current condition as documentation for my physicians.

Also, here is a new video that matches this blog.

http://www.youtube.com/watch?v=xYwS68XHXFw&list=UUcydKJKfDEHUUhUIp83sumA&index=1&feature=plcp

I started going down again in early September 2012. I first noticed more difficulty breathing with any little activity, which has continued to worsen. I also started becoming more fatigued and needed a lot more rest during the day. Just getting a bath totally exhausts me again. The pain (which I have mentioned before) down my right leg and left arm returned in early September. I had it before the last PLEX and it went away. It has now come back. The swelling in both legs continues and changes some daily. My rheumatologist says it is vascular insufficiency. There is some redness and discoloration on both legs and feet.

Breathing: It has worsened in the last couple of weeks. Almost any activity now causes breathing issues. This continues to be a problem and is debilitating.

Mental Issues: I still have some memory and getting-my-words-out issues.

Vision: Double vision is worsening again. Moving objects blur easily.

Muscle Jerking: I still have lots of jerking, twitching, and cramps.

Tingling: Still present in both arms along with numbness.

Tremors: Still present.

Aching: Still present. The sharp pain down right leg and from center of back through left shoulder and to left hand started back in early September 2012.

Needle Pricks: Still insensitive over almost my entire body.

Sensory Issues: Still present.

Exhaustion: Increasing quickly.

Weakness: Increasing.

Walking and Balance: Between my last PLEX and now, I was able to walk on the sidewalk in front of my house (about 200 feet). As of early September, I do not walk much because it totally exhausts me and causes breathing issues. I am having more balance issues and cannot walk on my heels at all.

Autonomic Nerves: I still have autonomic issues. My pulse rate has varied a lot over the last couple of weeks.

Hypohidrosis: Still present.

Body Temperature Regulation: Still an issue. I have felt a lot colder in the last few weeks.

Photo-sensitivity: Still present.

Orthostatic Hypotension: I still occasionally get dizzy when standing.

Tenth Cranial Nerve Palsy: I do not feel hot or cold on the interior left of my throat when I swallow. Swallowing has been better in the last two months.

Voice: My voice began "cracking" again in mid-September.

Headaches: Now daily and very painful at times. Bi-PAP did not resolve headache issues.

Jaw/Temple Pain: Better at present

Whole Body Involvement: Still effected.

Swelling: I developed problems with swelling in both legs after the last PLEX.

Nausea: I was diagnosed this summer with gastroparesis. Having an EGD this Friday to check out my stomach. Gastroparesis has been giving me a lot of problems lately, even though I have modified my diet.