My most prominent MS-type symptoms are considered 'only' mild sensory symptoms. Some come and go. Some are with me most of the time.
- Numbness or reduced sense of touch in some places. Odd changes in skin sensation: anything from a prickly feeling to actual pain (known in the trade as parasthesia).
- Reduced or acute sense of temperature (thermoanasthesia).
- Overly sensitive to light or sound (known in the trade as hyperesthesia).
- Odd smells and tastes: sometimes the coffee is bad because the barrista isn't very good, and sometimes its just me (dysgeusia).
- Below average balance (poor proprioception)
Tingling, tickling, itching, burning, numb, sensitive. Really doesn't cover it. Weird neuro shit is my term.
If you're a regular person, when something odd happens to your senses, you go to your Doctor because Something Is Clearly Not Right. When you enter the twilight world of 'possible MS', 'findings suggestive of demyelinating disease', and other non-specific diagnoses, you eventually learn that no matter how freaked out you might be (initially), your doctor is unlikely to find your weird neuro shit 'diagnostically relevant'.
Your symptoms are also too vague to attract useful sympathy from your loved ones. They also tend to elicit encouragement to 'get out of yourself more', while the word 'psychosomatic' flashes from behind their eyes. Or is that just me?
At this distance from my first MRI I understand that weird neuro shit is most unlikely to herald an inevitable decline to feeble invalidism on a couch. So I don't freak out on that account. Sometimes I even play with the sensory disturbance du jour. There is a certain prurient interest in finding out how big your latest numb patch is, and testing how hard you have to poke your foot with a pin before you can feel anything. And don't get me started on how many times you can keep re-tasting that glass of wine your really, really, want to drink, to see if it's still disgusting.
The biggest problem with weird neuro shit is it undermines your confidence in your perceptions, your personal experience of the world, and that change is profound.
Try for a minute to imagine a world whether many, many small things are subtly "off" - but you're the only one who notices. Do you, or don't you, trust the evidence of your senses?
- When a meal tastes yukky, do you send it back or not? It could be just my funny sense of taste acting up. But if I ignore my own senses, and eat the dodgy meal, I could getting food poisoning.
- The stereo is too loud, and you'd like to ask your friend to turn it down, but last week at home you asked your partner to turn the volume down and it was only on 2...
- Is that a heat haze, or is it just my eyes going "googly"?
- Did I just get a static zap, or was that just weird neuro shit?
I reached a personal nadir recently, when I thought the shower was on the blink, because I wasn't getting hot water evenly across the showerhead. But when I stepped away to turn it off, my left arm felt hot water - it was only my right arm that thought the water was tepid.
Altogether, a fabulous recipe for self-doubt. I don't stress too much about weird neuro shit, I just make a note about it and it usually goes away again. But this second-guessing is a pain. And I'd like to know what's so 'only' about mild sensory problems.