huh

What is MS anyway?

I have a Master’s (MS) Degree and didn’t even know I was studying for it. It’s not an honorary degree either. It’s a real life, up close and personal, in your face degree. One of those “I studied my butt off” degrees. My next step is to get my Doctorate…and that’s not too far off. With the amount of time I spend at hospitals, doctor appointments, therapy and the pharmacy, I should have my doctorate in no time flat.

I have had people ask me, “What is MS?” If I say it stands for Multiple Sclerosis. It’s a chronic progressive disease where the nerves in the brain and spinal cord become damaged and eaten away by the immune system causing numbness, speech impairment, muscle coordination difficulties, blurred vision and severe fatigue (and that’s just the tip of the iceberg of what we go through)…I tend to get a blank stare and “huh” comes tumbling out of their mouth. Either that or they proceed to give me their cure for this incurable disease.

It’s interesting to me that we live in a time where knowledge is powerful and easily accessible (more accessible that any modern day business with wheelchair ramps and elevators) yet so few people actually use the knowledge available to them to truly KNOW anything. We are pros at the latest gossip and celebrity news; we know all the cheat codes and hidden passageways in the newest released game; we even know the difference between tap water, distilled water, spring water and mineral water; but when it comes down to things that actually matter, we are fairly ignorant.

If I were to write an entry in an acronym dictionary on what MS stands for, it would look something like this…

MS – an acronym for:

Multiple Sclerosis
Messaging Short
Many Sores
Majorly Sexy
My Strength
Mighty Strong
Many Smiles
Making Strides
Moving Still
Monster $(^&
Mystery Solved (coming soon to a theater near you)

The next time someone asks me, “What is MS?”, I’m going to whip out one of my acronyms because even in our highly intelligent and knowledge driven society, people can’t seem to grasp an understanding of Multiple Sclerosis. But I don’t blame them too much, I still have trouble with MS and I’m the one actually living with it every day.

Don’t get too discouraged when you find people are clueless about MS. I didn’t know anything about it until I was diagnosed. But now…now I could write a book on it and still not have enough space to explain everything. Maybe that means I’ve actually earned that DR degree after all. So call me Dr…Dr. Penelope! I like the sound of that. Are you a Dr. too?

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
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.

39 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Well done Penelope a degree can be satisfying. for you. What field is it in?
    I tried to get a Marketing degree but life intervened. The day of the exam my wife and our son (18 moths) were in hospital and there was a worry the he may die. So my head wasn’t into Kotler and marketing models for businesses. I did find out later I could have used my years training instead of sitting the exam. My thoughts were why didn’t tell me or advise me on the day before I sat. I have been told I looked like a dead person that day and should not have been there. But not really caring I sat it and got a D+.
    IF i had submitted my years work I would have got an A.
    But I still learnt a bit and use that in my job.
    There are some people out there who don’t really know about life only their position. But despise this the MS took away my choice of getting a managerial place in the company I was working for.

  2. Steve Keogh says:

    My MS degree is in being a master of disguise and fakeness because when everybody asks how I am I tell them I fine and doing great and copeing grand but every day is a battle with myself in my head but I know it’s the illness that’s talking to me and I will never give up to it so I have a PH.D in bulls*** and a Doctorate in pain management so bring it on

  3. Jessica
    Jessica says:

    Most doctors ask me if I’m in the medical field. A lot of them tell me I should go to school and get a doctorate because I tell them things they don’t know about meds they want to give me. So yes I am a doctor, I’m also a mother which qualifies me too.

  4. Sherri Gurski says:

    My MS walk team name is Major Scatterbrains, an apt description, at least for this girl! You can add this one to your list if you like Dr. Penelope!

    • Kimberly Farrar Waring says:

      From what I have been told by my Dr’s yes. But you have to have a spinal tap. That’s how they determine that. They are very dangerous. And I won’t have one done. I know a few that almost died bc the Dr’s didn’t do it right.

    • Sher Adams says:

      I’m real scared Kimberly Farrar Waring
      I’ve been real sick for 3 1/2 years with every symptoms of MS except I haven’t had a retinal scan yet but will soon.
      MRI showed no leisons and I just don’t know how much more I can take and keep my sanity I’m almost wheelchair bound.. They are discussing a lyme test..but what happens if they rule out lyme.. I’m so confused I don’t know what to do.

    • Robert Krone says:

      I’m surprised they haven’t tested you for Lymes! That was something they tested me for right away.

      Never heard of a tap being dangerous, but it’s not surprising that it could be. I had one done, and it was a lot easier than I expected, though laying on my back for so long definitely hurt. Would’ve been easier with the bed that I have now though, I’m sure.

    • Sher Adams says:

      Since I got some good people on this post please tell me what u think of this.
      A month before all these crazy symptoms started I woke up with my arm sore and I saw where something had bit me. That night it had started hurting so I went to ER.. ok here’s the question can a spider bite can give me Lyme?
      ER Dr said it was a spider bite that night and then a month later all this mess started..
      Also which Lyme test should I have them order?

    • Jessica L Suddreth says:

      Spinal taps are NOT extremely dangerous. My advice, if the doctor wants do a spinal tap have it done under fleuroscopy. It’s done in a hospital environment with x-ray guidance. I had mine done that way. It felt like heavy menstrual cramps. The important thing is to have a ride home and a person to care for you for 24 hours. You must remain flat on your back for 24 hrs or you run the risk of a 2 year migraine. You can get up to use the bathroom. A spinal tap is used to rule out many other diseases including Lyme Disease.

    • Jessica L Suddreth says:

      Yes you can have MS with no visible lesions. Did they check your brain, cspine, and tspine. MS can live in all of those places. Early MS is hard to diagnose because of remissions and also doctors don’t usually check everywhere.

      Spider bites can cause many problems on their own. You may need some kind of anti-venom.

      What are your symptoms?

    • Sher Adams says:

      No cat scan just MRI..
      The next test he wants to do is a skin puncture biopsy and after that he mentioned he would discuss spinal tap..
      I need answers so at 3 1/2 yrs sick and 75% wheelchair bound I’m willing to do any test I can that will show why I’m like this..
      I used to be very active. I’ve been in animal rescue over 30 years.. raked my yard planted flower and veggies garden mow grass travel..It’s like boom. I can’t do anything I loved doing and I’m about to give up. Tired of putting my husband in debt over me with no answers

    • Sher Adams says:

      Ty Rachel Laura . I needed to see this today. I told my hubby of 31 yrs last night that since the drs think it’s in my head I wanted to be committed then bc whatever is wrong with me has finally won and has completely defeated me mentally and physically

    • Sher Adams says:

      I’m so sick today I barely could get out of bed and make it to my recliner it’s a bad day for me. I’m worried about my son that is sick and it’s not helping things.. I did ask for request to be in group and she just approved it.

  5. Amy
    Amy says:

    Right after my diagnosis, my husband got mixed up on what RRMS stood for and called it remitting-repulsive MS. That title stuck.

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