Another Medical Mystery Solved?
- mycorneroftheworld
- Dec 8, 2018
- 3 min read
I have Multiple Sclerosis.
Unless you follow me on social media and have seen it already, that is not the follow up line to the last blog you probably expected to see. It wasn't what I expected to hear either. I still have everything else. I kind of wish it meant something else had been misdiagnosed previously but the the MS is just another layer in the medical mess. I still have RA, IH, Fibro, POTS, and everything else.
Part of the reason this update has taken so long is because after the relief of a diagnosis, I became instantly most medically frustrated. For over 6 months consistently I said something was really wrong in addition to the shunt not working. I knew it wasn't working but something wasn't right. But systematically, my medical team was being convinced one by one that there was nothing wrong with me and it was all in my head. They had me almost convinced that I was losing it and nothing was wrong even though I knew something was very wrong.
So I'm grateful that I had a doctor who decided she wasn't as comfortable as others were with me have a head pain change without a new MRI but I'm frustrated that in those 7.5 months between MRIs I dealt with doctors I'm supposed to trust trying to convince me that everything was okay when I knew it wasn't. I don't know what to do with that right now. I don't know who I fully trust and who I want to stay with but I know I wouldn't trust a new doctor either.
I have started an MS medicine. I opted for an infusion that is only every 6 months. I already take so many meds, I prefer to not add another med every day if I can avoid it. The first infusion they divide in half. The side effects weren't bad enough that I would stop trying it. My only issue is the 2nd part took so long that the medical center I was at said I can't do my 6 month infusion there, I need to go to main campus. Which may or may not work with timing sadly. That will all happen around the same time as my 6 month brain MRI and MS neuro follow up which are all at main campus. Two uber trips to main campus were already pushing it, a 3rd I don't know which means I may need to switch to a pill twice a day. I will see how it works out. I'm hoping to stay on the infusion but a med is a med.
Probably the biggest question I got privately from the last blog was why I don't mention the neurosurgeon's name. I've said this in the past (I think in that blog, but definitely in streams), I know who he is and if he ever came across my blogs, he knows who he is. My point of discussing my frustration with him or the Emergency Room Doctor I've discussed in the past is less actually about them and more about advocating for yourself when you know something is wrong. Many people with chronic diseases have seen many of theses doctors over and over. They tell you there is nothing wrong until someone "accidentally" finds something. In my case this time, we "accidentally" found MS. In the end, while this past year centered mostly around one person, it could have been anyone.
This is a short blog for something that took so long to write. I'm going to try to get better with my updates now that I'm over the blocks of not saying what I think about my doctors.
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