One Week after Plasma Exchange in October 2010

It has been one week since I completed my second five days of plasma exchange (PLEX) at Vanderbilt. It was worth it! Thanks again for your prayers and support.

Several doctors, health care professionals, and health insurance case manager(s) are keeping up with my blog because of the constellation of symptoms and diagnoses. I want to document as accurately as possible what is happening at each stage of my condition in hopes that others may be helped through my experiences.

It would also be great if what I write and document about all my symptoms would "click" with someone, somewhere and they come up with an "Ah Ha!" moment for me.

Tiredness vs. Fatigue vs. Drained

Tiredness is a good feeling after a hard days work. Tiredness is something that is diminished by rest and relaxation. My problem is not tiredness.

Fatigue, in my case, is the inability to really function as desired. The willingness and "want too" is there, but the body just does not respond. Fatigue comes from use. Using my muscles too much just simply makes them stop working correctly. The muscles just do not have enough good nerve signal to function. Fatigue does not feel good and is not diminished much at all by rest and relaxation--although it does help! I still have fatigue, but the PLEX has helped. I do not fatigue as quickly now! That is good.

I do feel very drained after a week in the hospital and five days of PLEX. I really think it sends my body into a type of system shock which lasts for a few days. I think my blood/fluid is beginning to adjust to my body again and I do not feel as drained as I did earlier this week.

Strength vs. Weakness

I can definitely say the PLEX helped my strength. This began to show around the third day of my treatment. I can walk better than I did. Buy my strength is still much less than it was before all of this began in 2009. I still require Mestinon every four hours. Watch my video about the effects of Mestinon (just below this post) and you will see what I am talking about.

My guess is that the PLEX helped the sensory-motor axonal issues as much as the Myasthenia Gravis--maybe even more since my walking is better. I may do a video about my walking this weekend.

Small Fiber/Autonomic Issues

The PLEX did not help the small fiber neuropathy. I still tingle and hurt all over. I still cannot feel needle pricks. I have also had lidocane several times and do not feel the "burn" at all.

Voice

I am still concerned about my voice. I can tell a difference in my volume and clarity. My uvula also is "hanging" lower and bumping the back of my tongue (I ought to be able to make a sermon out of that--or at least a song).

I had an ENT appointment this week and the Dr. did a scope of my sinus and throat. Everything looks good, no suspicious areas and no sign of acid reflux. The problems are all just symptomatic of Myasthenia Gravis. I am grateful for the report.

Breathing and Chest Pain

I still have a lot of problem breathing and a lot of chest pain. I will see a pulmonologist at Vanderbilt in the near future for evaluation. The PLEX did not help my breathing or chest pain.

Medication

Since prednisone did not seem really effective against my symptoms, my dosage is being reduced from 60mg to 30mg daily. Maybe that will help my weight and swelling lessen.

I also took my first CellCept today. This is used to help organ transplant patients from rejecting their new "parts." It may also help slow the progression of MG. I will eventually be on 2,000mg per day.

The CellCept works by lowering my immune system and my bodies ability to fight infections. I love ya'll . . . but I will wave instead of shaking hands for a while. I hope you understand.

See You Sunday!