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Things I Didn’t Expect Would Happen on My MS Journey

When I had my first MS attack in late 1998, it would be a month before one of the many health care professionals I visited mentioned the possibility of multiple sclerosis. All I knew was that after developing a severe cold/upper respiratory virus, my left side suddenly became numb and weak. I could barely drag myself across a room. My left hand was so weak my mother had to cut my meat for me.

A frightening experience

That was frightening in itself. More frightening still was the callous, dismissive, sometimes downright cynical attitude health professionals took with me, a stranger, about whom they knew nothing yet instantly accused of having panic attacks or depression. That was my first surprise, and the second one followed quickly on its heels. I stood my ground in the face of a bewilderingly irrational, sexist attitude towards women, judgments that came, I’m sad to say, from women as much as from men.

Ironically, the first specialist who took me in earnest and put me through testing was a 65-year-old male neurologist. My worst critic had been a 30-year-old female primary care doc who used my appointment time to tell me, a sick, 41-year-old woman, how unreliable and hysterical women are and should not be believed for one lousy minute. That was hard for me to process since I’d never heard that before from another woman. I made a joke about it in my mind that she must have time-traveled back to Victorian England for her medical education. That was much easier to think about than facing the fact that misogyny is what’s being taught to all the young ones coming up now. I couldn’t have anticipated this in a million years.

Most likely it’s because I’d had very little need for doctoring up until that time and was therefore out of touch. I naively thought doctors were automatically on my side and ready to problem-solve with concern and caring. Isn’t that why they took up the profession? Or did I get that sentimental notion from watching MAGNIFICENT OBSESSION, “Ben Casey,” and “Medical Center?”

After a hospitalization with round-the-clock IV steroids and extensive MS testing, the neurologist diagnosed me with cervical myelopathy and sent me home with a month’s worth of oral prednisone. I was told that while it could be MS, nobody makes the diagnosis after just one attack. I would have to have a second attack and get re-tested for them to revisit that kind of diagnosis. There was no follow-up. They discharged me with the suggestion that if I experience the same symptoms in the future, I should give them a call. That was it.

Shocked and blindsided

I was shocked, blindsided by the cold reality that they would cut me loose so abruptly. I had no diagnosis and was therefore no longer of interest. I think I grew up a lot at that moment. My childhood world view of avuncular patriarchs died a quick and painful death. I realized how very sheltered I’d been. Now I didn’t know what to expect, of them and of my future health.

Like so many PwMS who came before me and those who have come after, I felt shattered by my experience, often reliving it in a way not unlike those who have Post-Traumatic Stress Disorder. I felt terrified about my future. On the bright side, however, the terror evaporated three years later. The future had become the present and I was okay, still working, and mildly disabled. The future always looks brighter when you know you aren’t going to die from this thing.

My second attack

My next surprise was that when I did finally have that second attack, I didn’t know that’s what it was. I’d spent a full five years in remission. The weakness and numbness of my first attack had mostly subsided after a month or so, leaving me with a little foot drop that only kicked in after having walked seven miles around town. Five years later, I’d just started a new job and woke one morning with a numb, weak left arm and hand, and with shortness of breath.  My first thought was carpel tunnel, not MS. I didn’t want to think it was MS, having had the luxury of sinking into steadfast denial for five solid years.

I recovered within a few months but retained permanent disability in the left hand. One cold January day in 2005, six years after my first attack, my neurologist told me this:

“Since your lumbar puncture tested abnormal, I’m now convinced you have MS. So I’m giving you an official MS diagnosis and literature about Rebif and Copaxone from which you can choose.”

A sensation welled up inside me like ice water trickling into a pitcher. I shuddered.

“You’re not gonna cry now, are you?” he said, watching my tearless face. “It’s not like it’s a big surprise.”

I fell mute with sadness and shock. The diagnosis awakened my dormant grief and the sting of his callous remark locked my jaws. I wondered what kind of diagnosis he thought would be appropriate to cry about. Stage IV cancer? I didn’t dare shame him about it and run the risk of getting gut-punched while I was feeling so fragile. So I ducked into a nearby restroom and let myself cry for a couple of minutes, then mopped up and hurried back to work. I told no one there what had happened. It was Be a Callous Jerk Day on Bizarro Earth. Best to lie low.

After many losses, increased disability, and early retirement, I am now living alone for the first time in my life—and I’m thriving! I’m more independent and capable than ever, and that fact continues to boost my confidence. My attitude is that if I am able to do a thing—even if it’s hard and painful– then I should do that thing. My efforts and the short recovery time and resilience that come afterwards make me feel more optimistic about how long I will remain independent.

And that’s the best surprise of all.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie
    2 years ago

    Why do we all seem to have the same experiences with doctors?? I woke up one morning with a weak left side. Hardly able to lift my arm or leg. So what did I do? I got up and got dressed to go to work lol. hey, I worked in accounting and it was the end of the month.

    When I went to my primary care doc after 3 days of struggling to walk he immediately sent me to the hospital for tests thinking I had a small stroke. No stroke but he kept me there for more tests. I have to say this about my primary care doc. He was more caring and understanding than any other specialist I have been to in the 16 years since.

    My sister is a nurse in a doctors practice. I was curious about the actions and demeanor of specialists. She said specialists are a different breed. After getting their degree in general medicine, they have to go 4 more years to get a degree in their specialty. They spend all their time studying and socialize very little. They don’t have classes in how to treat your patient emotionally. Well, maybe not but they SHOULD!

    My doctor sent me to see several different specialists, one of them being an eye doctor. I thought that was strange but when he looked into my eyes he asked if anyone had ever talked to me about MS. I didn’t even know what it was. He told me I have optic neuritis, again, I haven’t a clue what it was. This is how I got a diagnosis.

    After this, my doc sent me to a neurologist who ordered a spinal tap. I was told I had O rings in my fluid. Again a term I didn’t have a clue about. He gave me 3 different packets for the ABC drugs and told me to decide which one I wanted to go on. If I have one big beef with doctors it would be that they talk to us like we know what they are saying. Most of us don’t. All we know is that we are sick, afraid and clueless.

    Someone needs to tell them we need explanations when they are talking to us. Don’t assume that we know what they are talking about and we are afraid. We assume they know these things. Now about that class on how to treat your patience…..anyone want to teach?

  • Kim Dolce moderator author
    2 years ago

    Hi Julie, you are so right that this is a shared experience. We soon learn that we must advocate for ourselves and ask questions–of the doctors and of other MS patients on MS forums. Doctors either don’t have the time or are unwilling to educate us. We have to get aggressive, ask them to clarify, and tell them what we need. Then do internet research and check in here to compare notes and get more clarification from the patient experts.Exhausting but necessary.

    Thank you so much for commenting and telling us your story, Julie! –Kim

  • Therese27
    2 years ago

    I can’t believe how similar our stories are! At 39 and 1/2 years I walked off to my left like a bit of a drunk for 3 weeks at work. We laughed it off. I had a bit of a weird feeling in my left face so decided it was sinus went and Dr. Said probably so, gave me antibiotics. I worked around tow motors so I didn’t want the bosses noticing my drunken sway. The next day it stopped.
    The next year in February after I turned 40 I woke with vertigo so horrible I had to slowly crawl off the bed into the nearest bathroom in case I got sick. A Sunday of course, Dr at clinic said inner ear infection, antibiotics. Definitely couldn’t work this time.
    As the story goes, the ear infection turned into over 5 months plus of very very drunkly swaying to the left when I walked. Test upon test. Nuero said allergy, he said Nuero, my physician said 5 lesions on the brain but no other real symptoms (not even thinking of what had happened the last summer) Thank God it isn’t MS. Back and forth for over a year and a half. Almost lost my job, Numerologist didn’t want to fill out paperwork when my leave had to be extended. No diagnosis so it was all something I was making up to Bosses and many people.
    I kept telling my family doctor whom I have seen since I was 24 that something was wrong with the left side of my face. I felt as though I went to the dentist and the numbness never went away. However it is not the skin just underneath the skin like the muscles. He always said he just did not know what that could be.
    The Nuero my physician referred was not warm and personable. She was very cold and literally looked down her nose at you when she talked to you from behind her cheater glasses. It was time for a one year check up from my MRI. I went alone not wanting anyone else there. I talked with her about the left side of my face which was no longer numb, it had began to ache. She looked at me and said that it made it clear that I have MS. The MRI that I had 11 lesions and what was causing the pain in the left side of my face was Atypictal Trigeminal Neuralgia. She looked shocked that I cried a bit after hearing Thank God it’s not MS by everybody for so long. All I could think was “If my Dr. said that, what is going to happen to me?”
    I had to be let go due to time off after working a few more years. My biggest problem is FATIGUE, my brain goes first then my body. I worked with a computer putting stock into inventory, I could no longer remember if I had actually entered an item once I hit enter because tie disappeared from the screen. Lost too much time backtracking, boss and I started check off so I would know I did it. However fatigue won out and by five hours I was so busted I even couldn’t stand to listen to music on the way home.
    After a seven year fight for disability I finally have had a little less stress for the last fee years. I have been fortunate in that I refused to see that Nuero. and found a caring one. I have a pretty good support group, and my relapses have been few.
    As for those nonbelievers who want to say it’s all in my head, well, most of it is right now. I wonder if they want to experience the pain of MS in your head can do to you?
    This is the first time I have ever shared, thank you for sharing.

  • Kim Dolce moderator author
    2 years ago

    Therese, I’m so glad you shared your diagnosis story here! Readers will appreciate the level of detail and feel a little less alone knowing we all have things in common. It’s great that you found a caring neuro and a helpful support group. I wish you the best of health. –Kim

  • potter
    2 years ago

    I know exactly how you feel, women have been treated horribly by doctors for decades. They tell us were hypochrodiacs, bored house wives, vivid imaginations ect. I had MS symptoms since my twenties and put off by every doctor I went to. I had a MS hug for three months one summer and had my legs quit in the middle of a bicycle ride. My GP told me I was drinking too much caffene, he gave me the same reason for numb arms and hands. He finally gave me a referral to a neuro, he thought I had hurt my elbow. I told him I was going to talk to the neuro about MS. He said they couldn’t do anything for me even if I had it. I changed to a different Dr. in the same clinic that would work with our insurance. So I was diagnosed at the age of fifty five, my neuro didn’t even tell me in person he called me on the phone. I am still angry with doctors and don’t trust any of them. Potter

  • Kim Dolce moderator author
    2 years ago

    Potter, I guess it’s a lesson we learn time and again: that we must advocate for ourselves and persevere until we find a mensch among medical professionals. They are out there, but ain’t it maddening that we have to seek them out to the point of exhaustion?

    Thanks very much for sharing your own experience. It helps us all to see that we aren’t the only ones doing a medical meet-and-greet with trolls, lol. Take care. –Kim

  • Michraf
    2 years ago

    Awesome article. So sorry you had to deal with such as*es. If there is one thing I’ve learned the hard way it’s that they work for us. We have every right to be critical and they have no right to be pompous or think they are superior..

  • Kim Dolce moderator author
    2 years ago

    Michraf, Thanks for the validation and understanding words. Yes, they do work for us–and I’m going to fire them and start the search over again until I find one that isn’t an alien from Invasion of the Body Snatchers, lol. –Kim

  • Christina Hegarty PT, DPT moderator
    2 years ago

    Thank you so much for your comment, Michraf! We’re glad you enjoyed this article!
    Best,
    Christina, MultipleSclerosis.net Team

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