I ended a previous post with information about my current MS symptoms. I wanted to continue talking about my MS here to give people some information about Multiple Sclerosis from my point of view.
In case you are curious about my current MS symptoms and what my DMT infusions are like check out this post (link)
Here is how the disease has progressed for me.
In 2010 I had my first experience with Optic Neuritis (ON). It was quickly diagnosed and resolved itself without intervention. I continued to have flare up and from 2010 through most of 2011 my right eye was almost always extremely sensitive to light. It meant that as I designed my soon to be forever home I was very thoughtful about light fixtures. In the next 8 years I got married, went through IVF, and had a baby. About a year after the Mini was born I had what started as an ON flair up but also caused a bit of vertigo. It was probably the first lesion in my brain but it wasn't worrisome enough for me to actually deal with.
In 2018 things got real. I had my first Multiple Sclerosis (MS) exacerbation. I was diagnosed quickly. Many people battle health care providers for years when suffering from MS. I had a history of ON so I was already on the radar for MS. I explained to my PCP Dr. B* what was going on and he sent me to the city to the MS Center in his network. I had an MRI with contrast and was diagnosed with Relapsing-remitting Multiple Sclerosis (RRMS).
RRMS is a kind of Multiple Sclerosis in which patients have relapses of MS and periods of stability in between relapses. The period of stability is usually called baseline and the period of worsening symptoms now usually called an exacerbation or a pseudo exacerbation. Older literature calls the periods of worsening flares or relapses but those terms seem to be falling out of favor. I will go back and forth but they all mean the same thing.
In August of 2018 I bought my first cane.
Fancy - Right?
Over the years I pretty much bought a cane every other time I had a relapse. My relapses we mostly short, lasting a week, maybe two. They popped up in times of high heat or high stress. They did not really impact my life in a way that I was worried about.
Previous exacerbations and pseudo exacerbations consisted of numbness and tingling in my right leg for the most part.
The ‘typical’ progression went like this: my right foot would get pins & needles and numb, then it would move up my calf. My calf would feel tense and sore. If the exacerbation continued it would move to my right hand, causing arthritis like pain and stiffness. From there my hand would start to feel numb with pins & needles like my right foot. I do not have drop foot, a common MS symptom. I needed the cane not for tripping, which is common with MS but to stabilize if I couldn't feel my right foot.
A ‘bad’ typical flair would then add my left foot and then left hand. Because the only thing that would change was needing my cane more, having to make better shoe choices and broken plates and dented pots and pans it seemed manageable. The hardest part was giving up most flip flop wearing. Everything else was manageable because it never lasted long.
Summer of 2021 things changed. I bought the Fairy Cottage, and noticed that my legs were not as steady as they used to be. They vibrated a lot more, went numb faster, got pins and needle more often with less of a 'reason' than they had at my normal baseline.
I chalked it up to stress and over exertion, and pushed on. In hindsight I know that this was the start to my worst exacerbation to date. I had an MRI in August that had two small new lesions that were active but I thought it wasn't a big deal. (Link Looking for Baseline, an article about MS treatment as a single parent)
Through out the past couple years my life has changed.
Here are my symptoms and how they progressed beyond what I considered tolerable:
- Long Existing Lower Body: My legs are painful, burning, and have vibrations running through them. My feet go numb all the time. So not that anyone wants to know this but here goes… if I am relaxed I find myself heading to the bathroom with a strong urge to urinate, all the time. Even if I just went to the bathroom, due to some fun bladder retention issues, if I sneeze, cough just right, am surprised or laugh, I will probably wet my pants. My gait keeps getting worse, but like most things with MS, there are good days and bad.
- Recent Existing Upper Body: My hand grip is tough, I am not dropping things so I can sustain for a while. My hand grip is tough, I am not dropping things so I can sustain for a while.
- Newer Existing Neck & Up: I had thrush and it seems to be gone, but my sense of taste comes and goes. No it is not COVID-19. It is a seemingly rare MS side effect. I have had word finding issues since I was diagnosed. I can usually tell when a exacerbation is coming because it get worse and worse. This time I can hear myself stutter as I look for words. I will need to be more aware of the feeling of aphasia raping up. I have found slowing down, resting, getting my ideas ready is the best way to find words.
- In the past weeks ... New! L’hermitte phenomenon, or Lhermitte sign, is an uncomfortable "electrical" sensation that runs through the back and into the limbs. I don’t feel the sensation in my spine, instead it radiates to my legs and sometimes my arms. Like in many people, it is elicited by bending the head forward. I seem to be getting dizzy at weird times. It started at the same time as the Lhermitte sign.. The pain has decided to work its way to my butt. This may not sound like a big deal but in the past the pain and burning stayed in my lower legs. To have the feeling creep higher is nerve racking (Get it? nerve racking, because its my central nervous system…Its a pun... )
- In the past week ... New! Vertigo while showering. This is pretty self explanatory. For the past week or so I have been dreading the shower, at least once during a 5 min shower (I have always been quick) I will get dizzy and start to feel like I am going to fall. Not fun considering the mini almost always showers with me. IT won't be a good look if I bowl her over. So far I have not actually fallen. I grab the wall and steady myself. It only last 2 seconds, maybe 3. Thankfully
*For the posts Dr. A is my neurologist, Dr. B is our family doctor and Dr C. is our ophthalmologist.