Went to the doctor on Wednesday to review all of my test results and treatment options. The doctor had narrowed it down to the best three, from the eighteen that are available, for how he wanted to attack and manage my MS; turns out I am only eligible for two of those due to my genetics results showing ii would not be able to metabolize the pill correctly. We are now down to two infusion options: Ocrevus or Tysabri, both have their positives and negatives. After talking it out with the doctor and my husband we have settled on Tysabri, while this is monthly infusions the doctor believed that this was the better of the two for me. This is where the waiting begins, now we wait for insurance which they said on a good end they give the approval within 5 days, and they have said it can take up to 14 days normally; once that happens the infusion center will contact me and we will get the ball rolling. Until then business as usual!
The day has finally arrived that we will discuss my treatment options and get the ball rolling; part of me is anxious and the other excited to get moving. My doctor’s plan was to narrow it down to about 4 options, after fighting with the insurance companies for what he believes are the best ones for me, and then we will all discuss today and get the move on. I am a little nervous of possible side effects, and glad that my husband will be with me to help make the decision. Short post for now, I’ll check in soon!
It all started shortly before Thanksgiving 2019 with what I thought was the beginning of a migraine, eyesight just not as crisp and just a slightly off feeling. On Thanksgiving day I started to notice a little bit of double vision, which I also attributed to possibly needing bifocals (because my last eye exam said I was close to needing them, but did not need that prescription yet).
Fast forward to that following Sunday things were not any better, possibly a bit worse, so I made an appointment at the eye doctor for a prescription check and the week of craziness began. My prescription was spot on, however she noticed some jumping in my eye and wanted me to see an opthamologist, (she is an optometrist). She called and they said to come over immediately, so I drove over there, (in hindsight I should not have bee driving AT ALL), and had a bunch of tests……. AND she wanted me to see a neuro opthamologist.
Next day, Tuesday, I went to the next doctor, (I did not drive), and had a bunch more tests. All of these tests proved my eyes were in great shaped and because of that the doctor was sending me for an MRI. When I asked him his thoughts, he said he was narrowing it to either a possible stroke or MS. Side note: my mother passed away from a stroke, and this shook me. Thankfully the doctor’s office was able to schedule my MRI for Friday afternoon.
Friday afternoon came along and my husband and I were off for the next test. I have had MRIs in the past, and figured this was no big deal; I was wrong, as i started to panic and they brought me out. The options were try again, and if it did not work then talk to my doctor and come back another time. I WAS NOT COMING BACK ANOTHER TIME, I NEEDED ANSWERS! So I sucked it up, was took deep breaths to keep myself for about 45 minutes, and I made it.
Driving home we stopped at the store, and not even 20 minutes after I left I got a call from the doctor. While my husband was grabbing the groceries I got the news, preliminary results are indicative to MS, I had multiple area that had shown inflammation including the area of the brain that would cause double vision.
Because it was a Friday evening, the most emergent way to attack it was steroids by mouth. We arrived at the pharmacy, and this pill only comes in low doses, so i had to take over 100 pills a day. I am happy to report that by the Christmas holidays I was able to see without a patch over one eye, that was the progress I was hoping for. (I neglected to mention the eye patch previously, but doing this was the only was I could see somewhat normally.)
I was unable to get a neurologist appointment until mid January due to the holidays. The day arrived for that appointment and I got a call that the doctor had the flu, they could still see me, but I had to go in there knowing that his partner was double booked with patients and that it would be a wait. We waited probably close to an hour, and that was fine, because I wanted whatever answers I could get.
Even though she was double booked, the neurologist did not rush me and spent at least an hour checking things, answering question, and reviewing my MRI with us. This was where I was told, there answer was yes that I had MS. Reviewing my MRI provided insight to that fact that this was not my first flare up, and that I had been brushing off other ones as just ” weird things.” While this doctor could guide my through my MS journey, she wanted to refer me to a colleague that specialized in Multiple Sclerosis. She sent me for an MRI of my spine, the previous one was of the brain, and reached out for an appoint with the MS specialist.
The following week I had my next MRI, this time with the assistance of some anxiety medication just in case I needed it. This MRI was of my cervical and thoracic spine and was a little longer than an hour, but the meds helped and I am glad i asked for them. Now we wait some more, up next the specialist visit in two days.
We visited the specialist, and I could not have been happier, my husband referred to him as an MS nerd because he really knew his crap. I found out here that MS was also in my spine, which maybe should have worried me, but I took it in stride because I felt I was getting fast, responsive and great care. I spent an hour with this doctor as well, and he explained so many things; he referred to my MS experience so far being like a pot of water set on simmer to bring to a boil. So it was there and it was doing things, that I brushed off, and then it finally “boiled over” causing the double vision.
AND so the are MORE test to be done before we come up with a treatment plan; 9 blood tests and 1 EKG to be specific, but all these tests will help him narrow down my treatment options. I had all of my blood tests done at a lab, and then the EKG at my primary. I am happy to say that after the discussion with my primary, my feeling of getting good care was validated. His exact words, “From a white coat, you have gotten really good care.”
And now we are at today, my next appointment is this week on Wednesday where we will come up with my treatment plan Until then thanks for reading, and i hope that I have encouraged you to look on the brighter side!