Saturday, December 5, 2009

Slacker Update

Well, I went to the neuro and she decided I have been in an Exacerbation or that is what it sounded like with the brain fog and fatigue I have been dealing with lately. She thought it would be best to start a three day dose of Solumedrol (IV Steroid) which I have never done before and never really wanted to start doing, but this time I conceded. I figure I will try it at least once and see if it benefits me at all. I think I was freaked out by the thought of what it could cause my Lyme to do in the past, but I think I am out of the woods in the case of LD now. So I did the first dose of IVSM in the office when I had infusion on Thursday and it went fine. They then arranged for a Home Health agency to come to the house an deliver the next 2 doses to me and show me how to administer the next treatments myself. We left an access needle in the port overnight and I did the final dose today and removed the needle after it was finished. I have seen this done several hundreds of times now so it was really nothing new to me - I just actually had to do the Heperin lock on the port line myself rather then the nurse doing it like after my IVIG treatments. No problem there! I also had another round of MRIs run yesterday to see how they compare and see if there is any new activity. I do not know when I will hear anything back on them. I do not have an appointment for follow up with her until the end of January.

I also made the appointment to see the Hematologist, but cannot get in to them until Dec. 22. The neuro took about 8 vials of blood for her own tests the other day to compare and see what the hematologist has to say when they look into the blood as well.

We are also looking into CCSVI and possibly going to have me tested for this as a possible cause or problem leading to some of my symptoms. I sent some info to my vascular surgeon and I hope he will be interested in looking further into this and helping me out - but I have also listed myself as a candidate for the study. I would have to fly to Buffalo to do the testing but I am willing to do that! It sounds pretty promising! Anything to advance research right.......

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