Hidden Symptoms of Multiple Sclerosis We Just Don’t Talk About – (which happens to be all of them)

By Susan Russo

I recently visited my local CVS store. As I was in the checkout line, a gentleman and I struck up a conversation. Our discussion eventually led us to the topic of multiple sclerosis. I mentioned to him that I have MS. With a startled and unbelieving expression on his face, he said, “You have MS? No way, you have MS! You aren’t walking around like a drunk person!”

I just stood there with my mouth agape and proceeded to give him my best eye roll possible. (Eye rolls usually prompt a vertigo attack from me, but it was worth the risk). Then he asks me, “Are you sure you have MS?” I was so stunned by this ridiculous comment that I wanted to throw myself onto the floor or slam into a wall, but I politely refrained.

As I finished paying for my items and stepped away from the line, I noticed a woman giving me the, “girlllll….go-get-em-kick-his-butt look” for asking me such a stupid question. Finally, I said, with the utmost respect for his ignorance, “Yes, in fact, I do have MS.”

Believing our conversation had ended, I headed for the store exit. But this guy apparently decided to push the issue and said, “What are some of your symptoms, if you don’t mind me asking?”

Actually, I did mind, completely, but being the really nice person that I am, I said, in the longest run-on sentence I could muster, “I have burning and electric shock sensations, severe dizziness, vertigo, trouble putting my words together, fatigue so bad, I call it my “wet noodle” phase, extreme mood swings including periods of outrageous, uncontrollable laughter and moments of such despair, I think I’m in hell itself. I also have constant ringing in my ears and oh, yeah, I almost forgot, a really strange sensation of hot water being poured inside me, if you can believe it, and don’t even get me started on the incessant itching in my feet!” But hey, at least I’m not stumbling around like a drunk person!

He looked at me like I was absolutely insane, and said “Wow. That’s a lot of weird stuff. I don’t think you should talk about it because people probably won’t believe you.”

Exactly!

At this point, I wanted to smack this guy all the way to China, but, instead, I said, “God Bless you sir and have a nice day”, then, I said, “I will pray for you. You’re gonna need it.”

Here’s the thing. So many of us with MS don’t want to talk about it. Especially those really weird, unexplained sensations. Because, like the gentleman in the CVS store, people simply do not believe you. And sometimes, that even includes our own medical professionals.

I once told my doctor I could feel electric shocks in my legs along with a “biting foil” sensation. He said, “Well, I don’t know what that is, but I don’t think it’s a symptom of MS.”

Here’s the deal. Some of the most not-talked-about effects of MS are the worst and most difficult to handle, especially if our “truth” is not validated.

We want someone to just listen; to really hear what we are experiencing and acknowledge it’s existence.

When we are denied our “truth”, this says to me that my disease is not real. Well, I’m here to tell you, my MS and it’s plethora of ongoing reality is real. Period. End of story.

So, to that I say, talk about your unseen silent symptoms of MS. Share them with those who love and care about you. They will listen. They will believe.

And if they don’t, just do what I do. Roll your eyes in the back of your head, wave your hand, put a little “sass” in your step and say, “WHaaaatttt-Evvvvvr!”

Then, quietly walk away and pray you didn’t just set off a major episode of vertigo.

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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Essie Williams says:

    I was diagnosed almost 6 years ago. Being 55, I often questioned whether something is or isn’t a MS symptom.

    • JaneDenzer says:

      I was also diagnosed late in life, in my 60s. However years ago in my late 40s I had very strange symptoms, ringing in my ears and numbness in my head. My primary care md sent me to a neurologist who never did a MRI. I don’t even know if they did them at that time. He said I was good. Twenty years latter I developed optic neuritis. I was sent to an optomologist neurologist. He immediately sent me for a MRI. Two days latter his call told me was I was positive for MS? What a shock.
      Six months ago I fell and broke 6 ribs an 2 breaks to my pelvis. Now my biggest problem is deciding whether my problems with balance are
      result of the pelvic fall or the MS. Even the neurologist can’t answer this question. I was told it would take a year for pelvis to mend. Now it’s just a waiting game.

  • Fehmi Aydin says:

    My Daughter has been on Copaxone 40 mg, 3 times a wk for 10 years and she is doing great but she is developing injection site reaction with painful injection areas and depression under the skin in many of those areas. We have started a discussion with her doctor to switch her to an oral medicine such as Gilenya or Tecfidera but not sure which one is the best in terms of side effects and long term therapie. Does anyone know what’s the best way to go about the selection process? Any suggestions for ways to go about talking to anyone who is taking either of these 2 pills?

    • MSAA says:

      Hello Fehmi,

      Thank you for reaching out to MSAA! For some guidance on selecting the right therapy for your daughter, we recommend that you and she check out our publication – How to S.E.A.R.C.H.™ for the Right MS Therapy for You! which can be found at: https://mymsaa.org/ms-information/search/
      You can access this publication online or you can order a copy for yourself.

      As for getting in touch with anyone who has experience with Gilenya or Tecfidera, you or your daughter can take a look at our My MSAA Community, which is a free online peer-to-peer forum where members can share their stories and questions to get feedback and answers from others who have been there. You can find the community here: https://healthunlocked.com/mymsaa

      Good luck to you and your daughter!

      -Emily

      • Rosalie Gomez Galenec says:

        Hi, I taken Gilenya since 2011. I was the sixth person for Kaiser Hospital in Los Angeles to give to. I have had no problems with taking this medication. My cousin’s husband also has MS and when he started having similar symptoms as your daughter, he spoke to me. Now he taking Gilenya and said it was the best thing he could have done for himself. Good luck.
        Rosalie

  • Ineatha says:

    I loved your story. I was diagnosed with ms in 2007 after a stroke which doctors see as my 2nd ms attack. They called the 1998 optic neuritis attack where I went blind in my right eye my first attack however I was having severe vertigo episodes long before the optic neuritis. As long as I have nearby wall or a store basket I don’t have to use my walker. Which I normally only use for long distances.

  • Patricia says:

    I have had many comments about my MS that have caught me by surprise sometimes. Some of the comments:
    A friend waved her hand in the air saying “Oh they will come along with a pill to fix that.” My husband once said, “Why do you want a vacation? Why you are on vacation all the time now.”
    And…during a visit to my doctor, he asked how I was doing. I told him all of my current ms symptoms. He said, “You are having all of those symptoms at the same time,” his voice questioned in disbelief? My reply, “Yes, that’s why they call it ‘Multiple’ Sclerosis…there are multiple physical symptoms happening at the same time.”

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