Update from my first visit with my Mayo Clinic doctor: Dr. Michael Cutrer.
First of all he read through my summary before he met with me and had ideas of a plan before he met with me and all of my spreadsheets made things go so smoothly today. So my effort was not wasted.
The Plan: On Monday bright and early I go in for my third and hopefully final 😉 (wishful thinking) Lumbar puncture (spinal tap). BUT this time they plan on doing so much more with the fluid than before. They plan on running several assays to determine if I have any immune deficiencies or any other illnesses that might come in up on the testing. If everything from that testing and the pressure testing from the lumbar puncture itself comes back normal we will just have to wait 48 hrs and then we can come home on the other part of the plan…if something turns up I will go back in to see the doctor to discuss whatever they find further.
The medication part of the plan: someone finally listened to me that Prednisone works. That my headaches/migraines have an inflammatory response that seems to be helped by prednisone. So he is going to start me at a very high dose and step down every week over the course of 8 weeks. If anything to finally get some relief a little more long term than 1 week. And at the same time he is going to be titrating me up on Neurontin, a medication I was given at the same time that I was given Keppra (a drug I knew to cause anxiety), and we were never able to determine if it would really help. In fact I was only on a dose of 100 mg/day…and this doctor wants to titrate up to 2400 mg/day over the course of the 8 weeks that I am on Prednisone, so that when I stop the prednisone I am at the highest dose of Neurontin which will hopefully take over the pain prevention. These are hopes, not guarantees. But at least their is hope.
So now my mom Sherry Dunne Weaver and I get to enjoy the weekend and hopefully meet up with friends. So what are you guys up to this weekend: Chris Gottschalk and Karen Connell. I am pretty sure that we are going to head up to Minneapolis one day to see Jeremiah Carpenter and Kelly Carpenter if it works out for them. And Mary Francis we will have to try and meet for lunch if you can get away one day. I believe I won’t be at the clinic long on Monday and will want to rest…but maybe we can take the shuttle to where you work on Tues or Wednesday for lunch. So many folks in this area 🙂
Now that my anxieties are calmed, I know the plan and it makes sense…I feel a load of relief lifted off of me. Thank you for all of you who are praying (and that list is so long to tag everyone and I wouldn’t want to miss any, so just know that know that you are praying).