Bottom line – I am in a relapse right now, and have optic neuritis for the first time that I know of, but I had no idea. I just knew I haven’t felt good for quite some time and have seen a lot of doctors and paid a lot of copays, trying to figure it out. It can be so hard to separate the MS from the other changes in our bodies.
Here’s the clues we either overlooked or discounted as something else –
In October, my walking deteriorated and I went back to physical therapy to do more gait training. By December, I developed a hammer toe, probably from doing planks in the gym with my trainer. It’s a move where you support the body on the tips of the toes, and I could feel it was uncomfortable but I did them anyway.
I saw my podiatrist/surgeon and he gave me a plan – try orthotics for my shoes (which I did) and come back in 8 weeks if that didn’t help. It took a few weeks to get the orthotics right because the maker had misread the prescription and were treating me for something else. I just knew they weren’t right and kept going back until it was sorted out.
Late February, I was unable to stand up pushing off with my right leg – I had to push off on the edge of my desk, the arms of my chair or even the back of the toilet to get to a standing position. It then became very painful in my calf- it wasn’t red or inflamed like an infection, but nonetheless my husband dragged me to the doctor for an exam, the subsequent ultrasound did not find anything wrong, specifically looking for a deep vein thrombosis (DVT) also known as a blood clot. This lasted about 4-5 weeks and gave me something new to work on with my trainer – standing up, thinking the repeated work on that task would benefit the muscles. I was fairly certain since there was no DVT, this had to be associated with my hammertoe, although the pain was separated by a good 10-12 inches.
A persistent UTI created havoc and required multiple rounds of antibiotics – setting up the perfect symptoms for a pseudo-relapse which could be treated by antibiotics.
During these several months, my energy level plummeted and I saw the MS Nurse about the fatigue – we adjusted some of my meds and scheduled a follow-up. The next time I was able to tell her it wasn’t much better so we made more adjustments to my meds. We discussed that my annual MRI was due in June and we set it up so I could get it done one week before my next appointment with my neurologist.
Then my hammertoe foot grew to be very painful with every step , the podiatrist ordered an x-ray, and blood tests (to look for infection) and those were clear. Then he ordered a CT scan which also showed nothing, but my foot was still painful. As a final step, he ordered an MRI, which shows I have a very nasty stress fracture, most probably caused/made worse by my gym session and especially those planks – this is not the first time I have discovered that exercise can hurt you. Consequently I spent 5 weeks i n one of those knee-high black velcro boots holding my foot hostage and making my wobbly MS walking style even worse. I was off-balance continuously and moved around as little as possible.
The MS nurse said even if I were in a relapse with all my fatigue and balance problems, they would probably not treat me for a relapse because steroids would slow the healing of the stress fracture. Most probably the fatigue was from the injury/trauma to my leg and hauling that extra weight on my leg.
At my last annual eye exam, the ophthalmologist said I was probably about ready to move from reading glasses into prescription strength lenses. During March Madness I noticed the picture on the television was a bit blurry and reading those small box scores were almost impossible to guess correctly. My distance vision while driving was also decreased – I have always had virtually perfect distance vision and I attributed this change to my aging, hearing the words of my ophthalmologist- she said to call when I knew it was time for real glasses. I did call and set up and appointment, figuring the time is now for prescription glasses .
Through this entire time, my fatigue never went away. I have been constantly exhausted, but pushed through with doing the daily activities I had to do, such as go to work. But there sure has not been much extras done beyond the basics. Everyone around me suggested I slow down, but weren’t seeing that I was already at a crawl.
My brain MRI was done, and the following week I am back at the clinic for my annual neuro check. By now, I can only read clearly to the second line of the vision chart, but I can guess at the letters on the next few lines – I have been reading that same chart several times a year, since 2008, and although I have not memorized it, I do recognize the letters and shapes easily. I tell the nurse I have that eye appointment scheduled for next week and know I need glasses.
My neurologist starts our appointment by getting my list of symptoms – what’s bothering me. I go through the above list and he is taking notes. Then has says let’s look at my MRI results- he confesses he had not had time to look at it yet. Yep, lesions are still there but nothing new or alarming popped up. BUT he looks at the radiologist’s report and say he trusts her with his films – very unusual since he has always said about other radiologists’ that he doesn’t use their reports. She notes that it appears I have inflammation of the optic nerve, even though I didn’t have the optic nerve MRI specific test run.
Before he reads further, I tell him my guess would be my left eye – and yes, there it is, on the image and in her report. I leave the neuro appointment with the news I have ON, a prescription for steroids in hand, and I left shaking my head that this could have been going on for the past six months and I hadn’t a clue many of my current problems could be MS and not just aging and life in general.
It was somewhat a relief to know there is an explanation for most of these symptoms, but bothersome to me that I had not connected the dots to see it was almost all due to my MS. No matter how much I think I know about MS, I still need that doctor to help me sort it out. How often do you find yourself second guessing about relapses if they aren’t a dramatic change to your health?
For a change, while I’m usually saying I can’t blame everything on the MS, in this case I probably should have …. It’s hard to guess just when this relapse started, but I am thankful I didn’t spend money on new glasses.