I suppose if there is one thing that is sure to incite me is to call me a hypochondriac. That or tell me that any physical ailment I have is due to stress. I will make the bold assertion here that if you weren’t a hypochondriac before, the diagnosis of Multiple Sclerosis will give you a clear boarding pass onto the hypochondriac train. At some point during your disease you will be accused of …well…stretching the truth a bit.
I remember the first time I got that look from a health professional who clearly did not believe anything was wrong with me. I had gone to my general practitioner with my list of symptoms (which I know now to be caused by MS) and one of them was visual disturbances. My doc ordered up blood tests and then an MRI to get things moving along. And he also told me to see an ophthalmologist for what he was telling could be optical neuritis. So off I went and encountered the tech from hell.
This surly young woman took down information for the eye doctor. She began her pop quiz on my peculiar eye symptoms.
“Why are you here?” she demanded.
“Well I am having some interesting symptoms including some issues with my eyes and my doctor suggested I come here.”
“So what’s the problem with your eyes? Which eye is it? Right or left or both?” she quizzed while never looking up from her pad.
“Well uh…it is more the left eye but sometimes the right eye and I get these flashes of light in my periphery.”
It was then that she was becoming more disgruntled. “Okay I will ask again, left eye, right eye, or both?”
Becoming more wary of her demeanor I squeaked, “Left.”
“How long has this been a problem?” she grilled me.
“Oh my…I am so bad at keeping track…well hmmm…” I stammered.
Completely frustrated with me, she gave the question to me in multiple choice options, “Days, weeks, months?”
“Well see it comes and goes…I suppose months if you look at it that way.” And I realized as I said this that it would undoubtedly piss her off.
I was right in the look that she then gave me as to tell me with no words that I was wasting her valuable time.
“What are you seeing in your periphery?” She then listed all these crazy options which I had difficulty remembering: “Star bursts, spots, lines, rainbows, poodles carrying umbrellas?”
(Not fully remembering what she said I am taking liberties to improvise here.)
“I choose star bursts. Yeah they most resemble those.”
At that point she left the room in disgust undoubtedly to tell the doctor that I was a malingerer. When he finally did the exam he told me in front of the evil tech that he could see no evidence of any inflammation of the optical chord or anything else wrong for that matter. The little smile forming on the tech’s lips told all.
When I did have my MRI it showed an active lesion on my left optical chord. Boy did I want to go back to that tech lady and say, “I TOLD YOU SO I AM NOT A HYPOCHONDRIAC! I AM A HUMAN BEING!”
But of course I didn’t. She will just never know that I was right and she was wrong.
I have had other moments as well where my symptoms were questioned as suspicious and even from family. I was experiencing some gait problems one day with foot drop and some stiffness and it happened in the parking lot to go into a store. I was with my husband and he noticed my gait and made note of it. We were walking around in the store and pretty much by the time we were leaving my normal walking resumed.
“Hey your walking is okay now” he updated me.
“Yes it is,” I validated his observation.
“But how does it just appear and disappear so fast?” he quizzed.
“I don’t know. I guess that is why they call it relapsing remitting MS.” I must admit I was starting to get a little angry.
Then when we were going to the gym one day my MS gait took over. My husband then made the claim that, “Gee…every time we go to the gym you start to have problems. Are you just trying to get out of working out?”
“Yes dear, it is my evil plan which I have been plotting for months now.” which shut him up quick.
It just seems to come with the territory of having MS, that you may be given the suspicious eye once in awhile. Perhaps it is a little understandable. This disease is weird. You have these symptoms which come and go and some of them are downright bizarre. Who wouldn’t raise and eyebrow if you told them such things as:
“I feel this sensation of bugs crawling up and down my legs.”
Or “I feel like my leg is immersed in warm bath water but nothing is there.”
I have had these particular symptoms so I know how way out there I can sound in describing these to others.
Perhaps we need a t-shirt which reads “I am not a hypochondriac, I just have MS.” I would be the first to wear it! I guess I feel the worst for folks who are in that limbo land and have not gotten an official diagnosis yet. I remember a feud on an MS on-line support group where some fellow asked everyone, “Why are you all so eager to have this diagnosis?” It was thoughtless at best but I tried to explain that nobody wants this diagnosis. But if you have the symptoms you want some reasonable explanation other than you are going insane. In that way it helps as well as knowing once you get that diagnosis then you can begin some sort of treatment.
Multiple Sclerosis can make anyone feel like they are having physical delusions. This is why it is good commiserate with others who have this disease. At least when I tell you that my skin feels like it is crawling with ants and that a patch of my scalp feels numb and I am seeing star bursts from the corners of my eye…you believe me. You do believe me don’t you?
I am a mother, a writer, and now an MS patient