I'll be heading back out to The Mayo Clinic, again, at the beginning of May. I have a feeling that I am going to walk away from that next trip with a bit more of a solid diagnosis and treatment plan, which is great, but there are so many other things tied in with it all.
I never came on here and gave a good solid update on where things stood after my last big trip. I got some answers from those visits that I am still working on coming to terms with.
See, with my specific situation, there are question marks around everything - I haven't gotten a solid answer about anything from a doctor in years. None of which is the fault of any doctors, I've just proven to be such a medical mystery that I have yet to figure out anything concrete.
So, prior to these updates I'm about to give you, this is a little recap of how things got to where they are:
I was diagnosed with a bone tumor disease, Ollier's Disease, when I was 9 (there have been multiple bone tumor removal surgeries since).
I was diagnosed with MS at the Mayo Clinic when I was 16 following a massive concussion (this diagnosis came after we found "white spots" during a brain MRI).
I was diagnosed with POTS at the same time, also at the Mayo Clinic.
I started taking MS medication, but I had terrible terrible side effects from it, and it didn't seem to be slowing down the development of those "white spots" in my brain.
In 2019, my mom and I found out that Ollier's Disease can cause brain tumors that are often misdiagnosed as MS (this happens rarely, but it happens). That lead to much research and many doctors visits, which then lead to my doctors overturning my MS diagnosis and replacing it with this diagnosis of multiple brain tumors.
During all of this, I was still passing out, losing function of my limbs, struggling to retain information, experiencing extreme sensory issues, extreme fatigue, etc.
In April of 2021, I developed extreme nerve pain in my face, doctors call it trigeminal neuralgia. Since then, I've tried steroid shots, nerve block injections, balloon compression procedures, all to no avail (there are more things currently in the works for this pain, but nothing solid as of yet).
Ok, so with that little recap, my doctors and I have been vigilant about getting my scans, trying new procedures, doing more research, really trying and looking into everything we can.
With my most recent visit to Mayo, I got my yearly MRI, but the doctor that tells me my results for that was out of the office, so I did a follow up with him about it about two weeks after the scan.
I'm still trying to come to terms with what he said. In order to understand why it's been so hard for me to grasp what he said, we first need to go back a few steps again so I can explain a few things.
So, being diagnosed with MS at 16 is not very common. It's usually a disease that shows itself much later in life. However, it is thought (not quite proven yet) that traumatic brain injuries (like me getting hit on the head with a baseball bat (oops)) can lead to MS. There are two things about the MS diagnosis that didn't sit right with me: the medication wasn't working on my "white spots" the way it should, and every. single. time. I told a doctor a symptom I was experiencing, their response would be something along the lines of, "hm... usually people experience that but slightly different, but it's close enough."
On the other side of things, Ollier's Disease is pretty rare. Rare enough but I haven't met anyone that knew what it was without me explaining it first, and I've never known anyone in person that has it. So the idea that I have this rare disease that does cause brain tumors that can be misdiagnosed as MS, it makes sense that that's exactly what happened. I was misdiagnosed.
Or so I thought.
Now back to present day with this update I've been going on about.
There has been talk about me possibly still having MS ever since I was first diagnosed. Some doctors never believed it was brain tumors, some doctors thought maybe it was MS and brain tumors, but we settled on the idea that it just simply wasn't possible that I was "lucky" enough to develop MS at the young age of 16 and also have this incredibly rare bone tumor disease that, in even rarer cases, causes brain tumors. The likelihood of it is almost zero.
So close to zero, in fact, that years ago, we had ruled out the idea that it could possibly be both.
Until now.
MS lesions (those white spots in my brain) look different when they're "active" versus when they are not. Prior to my last scan, we have never seen any of my "white spots" look like they are active, leading us to believe that maybe those spots are tumors and not MS lesions.
However, on my last scan, we caught some activity. My doctor was able to see on my scan what he says is undeniably an active MS lesion. This finding was shocking to all of us - we were all so thoroughly convinced that these spots were all tumors and that the MS diagnosis would never come back to haunt me.
With this new information, my doctor took yet another fresh look at my scans and came back with my current diagnosis.
I do have MS. That feels so strange to say again. I went 5 years correcting people and telling them that I don't have MS anymore, never did, but, we were wrong. I do have MS.
But, because I am just that lucky, my doctor is also thoroughly convinced that I do still have brain tumors. So of those "white spots" in my brain, some are MS lesions and some are brain tumors.
When I head back to Mayo in a few weeks I will be meeting with the MS team, looking into those active lesions along with new lesions that are all along my optic nerves causing some noticeable issues for me. We will talk about treatment plans and ways to manage some of the issues that I have been facing.
I'll be meeting with my head doctor again, and going through a decent amount of testing to be as sure as we can be about all of this.
My hope, for now, is that if I really am dealing with both brain tumors and MS, that treating at least just the MS will help curb some of my symptoms until we can better figure out how to treat the brain tumors.
I mean, if we can eliminate or even just alleviate some of my symptoms, that's a step in the right direction.
I don't know how much I agree with the idea that I have MS. It never felt like the right diagnosis for me. Maybe all we were missing before was the fact that it isn't just MS, but MS and brain tumors together. Or maybe we'll come back after a while and realize we were right to take the MS diagnosis off the table.
Either way, things really do seem to line up pretty well with MS, I experience a lot of things similarly to a person with MS.
I've decided that rather than be mad about the last few years and the diagnosis going back and forth so much, I'm just going with it.
It'll either be right and I can treat it accordingly, or it'll be wrong and we'll be in the same place we were before, but at least this way we have a course of action and a diagnosis.
So, to end this all... Hi. I'm Jenna, and I have MS... again.
