I had three medical appointments today, and I have to say I feel like I'm in the twilight zone. Why? I hear you ask. Well, I didn't have to wait more than five minutes to see any of them! The other point to note is that none of them were bad, which is becoming more common as I grow in confidence and get on the front foot with my treatments.
I started out with my tremor doc. A week ago I would have thought I had pretty much reached the end of the road in terms of what my stimulator was capable of. I was wrong. I had an adjustment and although the improvement was only minor, it was still an improvement. So, I am now thinking how much more can I get out of this. I guess that only time will tell.
While I was there we talked about stem cell transplantation and other drugs for CIDP. It was good to get his feedback and opinion even if as I suspected he was not well versed on the subject. His thoughts were that I was extremely knowledgeable about the subject and that any doctor would have to take my wishes into account.
After that I went and had a chat with my chemist. I wanted to get her thoughts on rituximab, and we ended up chatting for about half an hour. One problem that I overlooked about the drug was that it is insanely expensive. About $3500 a treatment, and is not covered by the PBS. So if I can't get on a trial, or get a pharmaceutical company or hospital to pay for it, it is probably not going to happen.
After that I had to run off to the mercy hospital to have a 'stealth' CT scan. Stealth is basically a way that they can superimpose the images of the CT scan over the top of my old MRI scans from a year and a half ago to check the lead placements from my DBS surgery. I had to question the relevance. Seeing as everything is working really well, surely the leads are in a good spot? Anyway, I had the scan, and I'm sure if something is wrong, they will call me.
Lastly, it was off to the physio for a bit of neck work, which felt great. All in all I feel it was a good day for me from a medical point of view. Until next time, stay well:)
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