I am not Multiple Sclerosis

I can’t seem to go through a week without someone voicing their opinion as to how I am to rid my body of Multiple Sclerosis. Some have suggested that I don’t even have MS at all; that it’s actually Lyme Disease or a deficiency of B12 or Vitamin D and that I just haven’t been properly diagnosed. All of those answers come from a place of a lack of information and too much Google.

Anyone can be tested for Lyme disease, B12 deficiency or low Vitamin D since those are simple tests to perform. I understand that some people in the world have been improperly diagnosed because a doctor rushed through the process and didn’t look at the tests properly, but most of us living with MS are real and not a misdiagnosed statistic.

The difficult thing with diagnosing Multiple Sclerosis is that there is not one test to complete in order to prove you have it. It takes multiple tests to rule out other diseases and even then the signs have to be progressed enough to properly point to MS. The further the progression, the easier the diagnosis.

Mine was and has been rapid progressing so it was easy to determine that I have MS. Within just a few weeks from onset I was diagnosed. Some people are left in limbo for years as the doctors work to rule out other things that mimic MS before being able to make a final diagnosis.

I know that puts a person’s life in a place of uncertainty and at times causes great stress, but if the doctor said it was MS without really knowing for sure, it could be very bad for the patient. MS treatments could cause great harm to someone who does not actually have MS. That’s why the doctor needs to be certain.

A good Neurologist knows what to look for, so if you are stuck in limbo land, find a Neurologist to get tests done and if needed, get a second (or third) opinion. And be thankful if the problems haven’t progressed far enough to truly detect or if it is determined to not be MS. Those of us living with progressive MS wish we were so lucky.

I also get messages from people informing me of how I can be cured. It’s bad enough to be told I’ve been misdiagnosed, but to be told I could easily be disease free “if I only _______” causes even greater stress. Just because someone was supposedly healed of MS by going to a prayer meeting, taking a certain set of vitamins and supplements, undergoing bee sting therapy, or eating a specific diet doesn’t mean it will do the same for me. We are all individuals with unique DNA and cellular makeup.

There are different forms of MS just as there are different people living with it. A benign case of MS is the best kind to ever be diagnosed with. It will cause symptoms and then disappear for years, and sometimes for life, to never reappear again. That’s the kind we all wish we had.

But regardless of which form of MS you are living with, the question that really matters is can you go through the hard times and still find something of purpose to live for? Can you face tragedy with the courage of a lion even if you do it trembling? Can you see the good in the progression of a terrible disease? Can you tune out all the opinions and voices out there trying to tell you how to live your life and just be yourself?

Don’t ever let someone’s opinion of you affect who you are, and don’t let MS define you either. You know who you are more than anybody else on the planet. You are the one stepping out of bed each morning and forging ahead in the struggle. You are not MS. You are oh, so much more.

Hold your head up and go through your day with confidence knowing that you are amazing, beautiful and on a journey that has the potential to inspire others as they watch your quivering courage. You have what it takes to get through the days and weeks ahead. You are strong enough. You are brave enough. You are tough enough.

Be yourself, however you are!

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

92 replies
  1. Sarah Evans
    Sarah Evans says:

    Ì hate when people look at you and ask “what’s wrong with You? You look fine. Ì wish I could take my brain out and say “ďoes this look Fine??”
    Ì may be young and look healthy, but the only peòple who seems to understand is my dad (my mom àlso had ms) ànd my husbanď

    • Mary Ellen Shedron
      Mary Ellen Shedron says:

      I 💜 your “wish I could take my brain out and say, ‘does this look fine’?” The only analogy I could ever come up with that helped questioners understand a little bit is “my brain looks like a teenager’s face with awful acne … Lots of sores … And each sore means something in my body’s not able to work right.”

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I was quickly diagnosed in about 20 days so I know how you felt. A bit fast and not a great amount of time to think. There is a lot of garbage out there of so-called miracles, but nothing can repair the damage done, just help us live with it.

  3. Carol Shinn
    Carol Shinn says:

    Yes … I feel your pain … I think that is such an upsetting situation… and stays with you and people don’t understand how much it really hurts

  4. Holly Patterson
    Holly Patterson says:

    Don’t like when “all natural” people say we shouldn’t poison ourselves with medications. Especially when they don’t have MS. I do so I do what my Dr and I think is best for me. So don’t tell me all diet and exercise will fix me. It will help but not get rid of my MS.

  5. Barbara Crawley Adams
    Barbara Crawley Adams says:

    I have had MRIs, lumbar puncture, and blood work and still had a resident question as to whether I had MS. He was such a bully. The MS specialist walked in and treated me much better but the damage was done. It is bad enough when all the people you are around try to tell you that you have Vitamin D, B12 (I have Pernicious Anemia) deficiency, Lyme disease, and then give you Dr. Terry Wahl’s website. It is hard enough to believe this yourself, but when people keep telling you that you look so well….

  6. James M. Dorn
    James M. Dorn says:

    I am working on a plan or method to transfer My, Your, MS to these wonderful dumb asses who know it all so they can enjoy MS and all that it has to offer….

  7. Brian Chris Wegner
    Brian Chris Wegner says:

    They are speaking probably from a outlook of fear and the need to do something for you….they love you and want to help, just don’t know what to do. So my dear MS Friends, let’s help them by being specific with what would help you – from the grocery store trips to laundry, rides to appt’s….whatever it is, be specific and they will be able to serve you, show you love and you will be blessed. Yep, they love you and they care!

  8. Erin Haley
    Erin Haley says:

    I get so frustrated with the people (especially the people with MS) who claim MS is really Lyme, or heavy metal poisoning, or based on diet. They are minimalizing the reality of what MS does to our bodies and our brains. It’s an ugly disease, a disease that effects every minute I live, every movement I make, and one without a cure… yet.

  9. Elle Cronin
    Elle Cronin says:

    As I also have anxiety issues there are so many times I’ve heard “it’s not all your MS….I think you’re just getting anxious” arrrrggggghhhhh 😤

  10. Jen Zordan
    Jen Zordan says:

    And it also comes from a place of concern, and a need to do something – anything to help. The bright side is that these people are looking at Google because they care about you, and annoying as that can be, try to understand. Our families and friends are helpless, and helplessness is not human quality that most of us are comfortable with. If it’s someone you love, you want to do anything you can to help them. When I am confronted with this, I say thank you so much I love that you are thinking of me. Please keep forwarding me the info, sooner or later something will stick!

    • Sandra Lorenson Holthe
      Sandra Lorenson Holthe says:

      I like your reply…it’s so true even though it sometimes gets frustrating for us. I’ve learned when people say, “you’re looking so good” to take the compliment as they intended it to be.
      MS has also taught me to be empathetic, so I’m able to put myself in other people’s shoes and understand a bit of how they feel.
      I appreciate your thoughts on ‘helplessness’

    • Annette Jolly
      Annette Jolly says:

      Don’t get me wrong. I appreciate concern and never show displeasure. This comment was between fellow sufferers. People often don’t know how to react so when I’m asked how I am feeling I just say I’m fine or, I’m not too bad thank You! No point in rambling on about how awful having MS is! If they really want to know, they will say ” Yes ok, and tell me. How are you really?” That is what I say to friends who are having a tough time and it shows you really do care and are ready and willing to listen!

    • Mike Cummings
      Mike Cummings says:

      While it is true most people do this out of caring, others do it to push a conspiracy theory or to put you down. There’s no loving intent when someone tells you you don’t actually have MS, or they lecture you on what a fool you are for falling for doctors who diagnosed you with a serious illness for the kickbacks from big pharma. Most well meaning people, friends and coworkers, are just concerned and to then I just say I’m working with a neurologist and am getting good care and leave it at that. So while I do appreciate peoples’ concern, it’s also true that good intentions only go so far.

    • Holly Myshaniuk
      Holly Myshaniuk says:

      Sandra Lorenson Holthe you are so nice about people sharing those ” helpful tips ” with you. You’re right….they want to help so badly. I have to admit that every time I see a “cure ” I get excited and think ” I wonder if Sandra knows about this !” And then I think that her doctor is very likely staying on top of all the new information on this disease. I remember getting so excited about the doctor from Italy I think it was who had a “cure”. Don’t hear much about that anymore. But I sure pray for a cure for you all. Met a really nice lady here who has it. She was a nurse and can’t work anymore.

    • Jen Zordan
      Jen Zordan says:

      Holly Myshaniuk I actually like getting the information from people who are looking out for me. My doctor doesn’t always tell me everything. There is a very promising study for secondary progressive MS, involving alpha linoic acid at high doses. My doctor didn’t tell me anything about that, my mom did. See my doctor for another two months, and he so rushed to get from patient to patient that he leaves a lot of information out, that I need to research for myself. And the other reason that I like it that people send me stuff is because I know that they’re thinking of me. I can’t get out much anymore,, but people don’t love me any less.

    • Carole Thomas
      Carole Thomas says:

      Haha When people tell me that, I always hear the unspoken “considering..” at the end of the sentence. I want to ask them what exactly I should look like- considering.

  11. Annette Jolly
    Annette Jolly says:

    Couldn’t agree more. It’s amazing the number of people who know what’s best for you- even more than you yourself. Or they tell you how well you look when you are feeling bad!

    • Amy Smith
      Amy Smith says:

      eye roll. I have a friend that used a wheelchair and when she was doing better the neighbor girl said, “My mom was right, you were faking it.” Lovely.

    • Heidi Dean
      Heidi Dean says:

      It’s the worst thing, like we don’t feel bad enough already! It really gets on top of me, especially when I’m not doing so good. People don’t realise how mean they are 😠

    • Carole Thomas
      Carole Thomas says:

      I was diagnosed with relapsing-Remitting MS in 2001, at the age of 47. Now, thanks to the grace of God, good meds and my own “screw this” attitude, I AM doing well. My own neurologist called me a poster child for Beta Seron. but I still get the “but you look so good… considering” attitude. They don’t hear the silent scream inside me because the inside isn’t nearly as good as the outside. I even had a doctor ( not my own wonderful GP) ask me if I was SURE I had MS. I told him I have had it for 16 years, I’m pretty sure I do have it. But if you doubt me, how about you spend a day in MY shoes, then you can decide. He got all flustered and tried telling me that that wasn’t what he meant blah blah blah. I should have asked him if he was SURE he was a doctor 🙂

  12. Jan Allary
    Jan Allary says:

    I have been told by someone to just get in shape! Right. Can barely walk 3 blocks due to the MS and NPH…….can hardly hit the gym to work out!

  13. Lindsay Hartwell
    Lindsay Hartwell says:

    I started following you because of MS like symptoms. I found out (through testing) that I have a vitamin D deficiency (thankfully). Been taking vitamin D since February. No more symptoms. Do you know how they found out I had a vitamin D deficiency? By testing me for MS. I doubt very much that they would have done all the blood tests, MRIs, EEGs, sleep studies and nerve test (what’s that called?) if they just wanted to diagnose vitamin D deficiency without ruling out MS. Which means, they wouldn’t diagnose MS without all those tests. Just saying.

    Btw, I kept following you because I like your posts.

  14. Beatrix Huber
    Beatrix Huber says:

    I’m sorry that you have to put up with the stupidity of I-know-it-all-people! Don’t all us MSers run into them frequently? I fight against the retirement insurance this week… they are allowed to ask requently if the ‘wonder healing’ took place, as for the insurance I am a ‘major loss’. Well forgive me, no, I am not healed, still not after 12 years. You can demand all the doctor’s reports in the world, I’m not getting healthier. *ugh* *annoyed* :/ So, Penelope, I hear you loud and clear! Try to shake it off, as we aren’t getting healthier, and they aren’t getting smarter! <3 from abroad.

  15. Jamie Outlaw
    Jamie Outlaw says:

    Next time you are told about these crazy cures that will make your MS disappear, ask that person if they are going to pay for it. I bet that will shut them down real quick. We have enough problems to deal with as it is. I realize some of them genuinely want to help because they are worried and they just want it to all go away as we do but then there are those it seems that they just want to play doctor on us. No thank you, this is why we have our own doctor All we can do is just hold our head up the best we can each day and show everyone around us that we are fighters.

  16. Maisie Eden
    Maisie Eden says:

    Love this post & all the comments. If only all these so called cures were true ms wouldn’t exist. Would love to put my whole body in a plaster cast & write on each part of my body that’s affected

  17. Jamie Outlaw
    Jamie Outlaw says:

    Next time you are told about these crazy cures that will make your MS disappear, ask that person if they are going to pay for it. I bet that will shut them down real quick. We have enough problems to deal with as it is. I realize some of them genuinely want to help because they are worried and they just want it to all go away as we do but then there are those it seems that they just want to play doctor on us. No thank you, this is why we have our own doctor 😀 All we can do is just hold our head up the best we can each day and show everyone around us that we are fighters.

  18. Laura DeLara
    Laura DeLara says:

    Just tell them to go to your next dr appt with you so they can talk to ur dr that dr can be aware of his misdiagnoses that probably would be enough to have them shy away

  19. Catherine Roberts
    Catherine Roberts says:

    Years ago, when I was first diagnosed and told people, the main comment I got was “But you look so good”…..15 years later, as I move around in my wheelchair, no one tells me I look good….

  20. Elaine Murphy
    Elaine Murphy says:

    Yep heard that – I get You look really well, Are you sure you have MS? Perhaps they’ve misdiagnosed you? Dirty looks from people when you pull into disability car spaces! Sometimes I wish people could walk in my shoes!!!!

    • Angie
      Angie says:

      I hear you about the dirty looks when you park in a handicap spot and get out of the car (and too everyone one else you loom “normal”).
      I have been dealing with this issue pretty much since I was diagnosed in 09. I was 26 then and everyone would look at me with disgusted looks, and I even had some people stop me and tell me to stop using my grandmother’s tag. I showed one person the name printed on my hanging tag and then showed them my driver license. And the first thing out of there mouth was you have no reason to need a tag cause you don’t look sick. I told them I have MS. This guy (plus his wife) changed his tone about the situation and I asked him if I could see his phone for a minute, I pulled up the Spoon Theory and put it on his home screen.

  21. Tria Dassler
    Tria Dassler says:

    Oh quit drinking diet soda (which I drink regular NOT diet) or bee stings will cure me. Since I “look good” most of the time, people assume I am not affected by MS. Ahhhh!

  22. Lisa Bunch Chappell
    Lisa Bunch Chappell says:

    People like this makes me sometimes wish that they could walk a day in our shoes when we have our worse days. But to be honest I wouldn’t wish this on anyone. I hear it all the time, well your doing very good I thought most people with MS was in wheelchairs. Are you sure you have it. I would love to just punch their lights out when they say that. I pray that a cure is very soon because they say that it’s not hereditary but I believe it is. I have to worry about my Son and two Grandchildren getting it. And that worries me to death. I’m sending much love and hugs to all of you…..

  23. Terri Ardolino-Stubbs
    Terri Ardolino-Stubbs says:

    My son was talking to an acquaintance at his dorm and told him I have MS. When my son said i can walk and still do a lot most days the kid said “from what I know of MS doesn’t sound like it…its people who fake diseases to steal money from government are ruining this country”. Wow-never thought that along with the ignorant comments about disease people may actually think you’re trying to get free benefits too! Sadly although I qualify for disability and have worked all my life i was DENIED because I worked for government and didn’t put into SSDI #

    • Eve Pittss
      Eve Pittss says:

      I know what you mean, my doctor told me to walk around as much as possible when I can so when people see me on a bad day in my wheelchair they don’t believe I have MS, and I hate going into a store because big store’s I use my wheelchair and smaller store’s I try and walk. I always have people telling me there is nothing wrong with me because I can walk. I feel sorry for people that have MS, I know the fight everyday, and you can’t fake MS and why would anyone want to, it’s a horrible disease.

    • Bonnie McCrane
      Bonnie McCrane says:

      I walk with a cane or walker as much as possible. Have to use a wheelchair when I go to the store and people give me “the look”. I get the same comments as everyone else gets and the “looks”. My own neighbors have made stupid remarks and insinuations about my MS (am I faking, etc). The public doesn’t seem to care that we don’t and can’t just go to a theatre without serious difficulty, if at all, or shopping at the mall is not possible for me, etc.

    • Beth Lowe
      Beth Lowe says:

      I was using a motorized cart in a store yesterday, a woman told her daughter “look at her, she doesn’t need that, she’s wearing makeup and she’s young” like my legs being affected by MS have anything to do with my ability to put on makeup. She said that with me in earshot. People are ignorant and rude.
      What she didn’t know was, it was my first time in a week wearing makeup, I was using the cart because if I didn’t I would not have been able to use my Walker for the rest of the day or had energy to eat.

    • Terri Ardolino-Stubbs
      Terri Ardolino-Stubbs says:

      Beth Lowe I feel you–people really don’t understand. I’m sorry you had to hear her ignorant comment. I used to get hurt and offended…especially when it seems like even family questions you…but I just brush it off now–it’s THEM that are ignorant about it, and I don’t need to explain!! Grrrrr!

  24. Julie Knapps
    Julie Knapps says:

    Yes exercises, that’s it… my legs won’t move but let’s exercise. P/T is great and i try to keep it going on, but exercise the way “others” think of exercise is very difficult for me.

    • Gina Beth Romero
      Gina Beth Romero says:

      One of my sons ugh told me that. He only sees me on my days off work, and I still often do stuff that needs to be done around the house, but he doesn’t see the struggle inside.

  25. Stephen
    Stephen says:

    MS hit me hard and fast – I was out of work and in a wheelchair within 7 or 8 years after DX. After a quick journey through treatments, from Rebif to Tysabri, I’ve been very stable with mycofenalate. I wish my first neuro had not been so dismissive about diet, but so be it. I have never had anyone doubt my DX, but I do get people touting various miracle cures. Do people with diabetes or lupus get the same? Trust us, if there were a simple cure, we’d all be doing it.

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