I realize it has been more than a month (closer to two, actually) since I checked in last with my 100th post on this blog. Since then we have gotten through the holiday season, the kick off of a whole new year, the first full month of 2020 and now the first Super Bowl win for the Kansas City Chiefs in fifty years (Congratulations, by the way!) Though things are going relatively okay with me, and I say this reservedly, other stuff has been happening with my Hubby. If you follow this blog or have read any number of my columns about chronic illness, you will most likely already realize this we deal with not only my Fibromyalgia but Hubby’s Multiple Sclerosis.
For those who aren’t so inclined as to read back through months of tapering, Fibromyalgia or other whiny posts I’ll include a little background on this here. And if this post draws you to this blog for the first time, I will take a moment to welcome you now. I hope you can draw some inspiration and encouragement from the words I have written within. Anyway, back to my synopsis on Hubby. Back in 2015, an irregular MRI was the first clue that Multiple Sclerosis was about to invade our lives and wreak havoc on us. Fast forward to now, a four year old diagnosis of Primary Progressive MS had been relatively stable from a clinical standpoint until his most recent MRI.
The images we received from the imaging center were not clear so the neurologist couldn’t tell with 100% certainty, but together with new symptoms he has experienced over the past few months, it seems likely there is a new MS lesion near the brain stem. This is significant because it is the first lesion found actually in his brain. This of course means that the MS is on the move, it’s progressing though we can’t be sure how quickly, but it also means that we are running out of time to attack this aggressively. Treatments we had resisted up to this point are now on the table, and some things are off because they simply would not be effective any longer. That window has closed.
So, what’s next? A dedicated MS specialist in the private sector who will take over his care and hopefully administer an infusion of Ocrevus. The appointment with the new doctor is coming sooner than we expected, but this is a good thing considering the VA’s tendency to drag its heels on almost everything through the Mission Act. The quicker we can begin the infusion treatments, the quicker we can tell if they are helping. With my own new and worsening symptoms, seeing a neurologist closer to home without the nerve-wracking drive to Tampa a few times a year is helpful.
As far as I am concerned, nothing has changed for me since December. I am still awaiting word on the test for Myasthenia Gravis. As of today, this has not been done, and I’m not even sure it’s been ordered. But I see my own primary care doctor in a week, so this is on the shortlist of things to discuss when it’s my turn to see him. The herniated disk in my back still causes severe pain and seems to be in no hurry to heal, as if it would at this point anyway. The last time I saw my pain specialist, I was informed that I was wise to undergo my voluntary opioid taper two years ago, for if I hadn’t done so, I would have been forced. The dose of morphine sulfate I took two short years ago, the one that sufficiently controlled my pain, is now illegal. Maybe he shouldn’t have told me this, but he did, and it infuriates me to no end. How dare they?
Once we see the new neurologist for Hubby in two weeks, I will check back in with an update, when the doctor thinks an Ocrevus infusion is likely, and what his impressions are. Until then, if you are the praying type, we would appreciate and welcome any and all prayers said on his behalf. This was not the news we had hoped for, but in many ways, I think I expected it. But we are both pretty frightened of the future and what it holds from this point forward. Life will be different. How different depends upon what this new doctor determines.
Thank you for reading.
If you know of someone who could benefit from the content in this blog, please feel free to share it. Please keep in mind that I am not a medical professional and as such, I cannot give medical advice. I can only share my personal experiences with chronic illness. Please do not misconstrue my experience for advice.
What I can offer is an ear, a word of encouragement and a smile, which I offer in abundance.
Featured image credit: Pixabay