Never a dull moment

Well my spirit is strong but my body is weak and so it goes with myasthenia. I saw my neurologist on Tuesday and a few changes have been made. First, he has decided to continue treating me with the IVIG but at 1/2 the dose as I seem to tolerate that much better. I was worried he would want to change me to plasmapherisis but given I have such bad veins and a congenital heart defect the IVIG seems to be the way to go. I was worried it wasn't working as well but he said that the fact I went so long with the reaction to the port stitches and only ended up in the hospital after I reacted to the Claritin, it was a good sign that it is doing as much as we can hope for at this time.

Also, the cyclosporine finally started showing up in the blood labs....hooray!!! This means I don't have to move to another major immunosuppressant but I am still not functionally where he would like to see me so he increased my dosage again. This is never fun because the first 2-3 weeks I have severe nausea and stomach cramping not to mention a need to visit the restroom every hour throughout the day. Hopefully that will taper off as I get use to the dosage.

We also broached the subject of having a thymectomy again. I am hesitant as it is major surgery but am getting closer to surrendering in the hopes that it will work and make me stronger. The evidence is not great in that 75% of patients do not see an improvement but I agreed to have a consult with the thoracic surgeon to weigh out the pros and cons. Please keep me in your thoughts and prayers as this is a major decision for me and my family.

Lastly I found out that my labs have been off for the past few weeks. My red blood cell count, my hematocrit, and my hemoglobin are all low and keep dropping. If my hemoglobin stays low the neurologist said a blood transfusion may be needed. At this point I welcome it as I have been so tired and even weaker than normal lately and it is supposed to really give you a boost.

So that is about it, I know it is alot of information but it was a productive appointment. I continue to have to use the walker daily and my vision is constantly affected by this beast of a disease. On good days I have no depth perception, on bad days I have double vision. They say this is the one symptom that tends to not go away with medication. I was lucky in the beginnning but I think the myasthenia is winning the battle in that regard. I will continue to do my physical therapy which consists of trying to strengthen my diaphragm, wrists, and ankles. The recent flare up set me back quite a bit in regards to overall weakness but I am hopeful that I will start to see some improvement soon.

Ta Ta for now and happy Friday!
Jen