When I was initially diagnosed with MS I was diagnosed with Relapse Remitting Multiple Sclerosis.  Relapse Remitting Multiple Sclerosis aka RRMS is the most common form of MS.  One year later, my diagnosis unsurprisingly changed to PRMS.  Progressive Relapsing MS or PPMS “with activity”.

People who have RRMS have unpredictable “attacks” or “relapses” in which the disease attacks a part(s) of their central nervous system.  Eventually recovering although they may have residual damage from the relapse and also have other ms symptoms. 

On the other hand, Primary Progressive Multiple Sclerosis progresses from the onset with no relapses or attacks.  Unless you have Primary Progressive Multiple Sclerosis with activity (like myself) which is also called PRMS for Progressive Relapsing MS.  It is said only 5% of people who have MS have this form.  It’s a double whammy! 10 to 15% of people with MS have PPMS. 

PPMS is said to be more neurodegenerative than inflammatory.  With PRMS you have both.

PPMS seems to affect older individuals from what I’ve learned.

With so few people having this form of MS, there’s not a lot of awareness out there.

If you’re not familiar with the devastation that PPMS can cause, think Annette Funicello or Richard Pryor.  I can’t help but think of them.

Also, with only one (unaffordable to many) FDA drug approved for PPMS vs fifteen approved drugs for RRMS, we need more awareness. 
I sure hope the pharmaceutical companies can come up with more treatments for the 15% of us who have PPMS vs the 85% who have RRMS and the fifteen available FDA treatments for it. 

Although I’ve had this disease for some time, it’s very slowly and insidiously stealing my mobility.  Below are some of the ways it affects me that are invisible to others.

1)  Burning cramping pain in the legs that keeps me awake at night.  This is relatively new.

2)  Very slow loss of movement/function over time particularly my legs….left worse  than right.  My right hand.  My once perfect A+ Catholic school penmanship out the window! Fine motor skills.

3)  Stiffness:  ALL OF THE TIME. Stiffness and neuropathic pain were my first symptoms. My hands seem to be affected the most especially after working out (although I didn’t work out today). I won’t stop.

4)  Dizziness & balance. 

5)  Numbness:  the least of my problems. 

6)  Trouble swallowing at times. 

7)  Tremors:  One of the most FRUSTRATING and still FRIGHTENING symptoms, although I’m getting used to them. Again, affecting my fine motor skills.  Forget applying mascara!  Dropped a cup and a couple of plates last week!  Cutting a zucchini yesterday like a pro, I was proud!  

Tremors also occur when working out, drinking a cup of coffee, etc.  I used to think it was a panic attack.  Imagine that. 

8)  The fatigue, both motor fatigue thats worsened by the heat and “I CANNOT MOVE” fatigue is very real and brutal.  You have to rest after EVERY SINGLE THING YOU DO.  Pathological fatigue is THE most common symptom affecting everyone with Multiple Sclerosis my MS Neurologist says. 

9)  Concentration is hard work when your brain is damaged.  That’s what MS is, brain damage.  

10)  Progression: In one year I’ve gone from riding my bicycle fifteen plus miles to just two miles last week and being unable to ride today.  Just one year.  Walking any distance is tough.  My legs are just weak and making my ms visible.  Gone are the days when I could do all of the laundry in one day.  Going up and down a flight of steps is tricky.  Working out, my left side is so much weaker than my right and at times unable to work it, resulting in less (noticable) muscle.  But hey, I’m grateful I can!  

I’m grateful for every day and I make the most of what I do have.  I try not to worry about the future.  

But I do.

Thanks for reading.


4 thoughts on “My MS

  1. Kathy Lewis Reply

    Karen, your honesty and openness once again sheds a light on the true symptoms and how they affect your life with your more rare type of MS… and I worry for you too. I don’t have MS… but over the years watching your pages and your lovies (Luka, Sir Leo, Grandogma and Quinnie and Prommie and Marvin and Pablo and Bailey Boo and Tallulah…and Phebes… I feel the joy you show us, the comedy, the cuddles and the struggles. I know you know how to just put 1 foot in front of the other.. and you do it every day…but keep on keepin’ on. We care and keep you all in our prayers.

  2. Georgia Reply

    Yes…..I remember Annette, and how it went for her. I shuddered when I saw the ways that this is affecting you. Truly, to know you on FB, one would never even imagine. I wish there was more I could do for you besides pray. You’re right in there with my 2 closest friends who are also going through some heavy physical ills. It’s good that you try not to worry. Like Joyce Meyer says, “worry is a down payment on something that may never happen!” Stay in the day, and stay close to the Lord. You are a remarkable lady!

    • Pug You MS Post authorReply

      Thank you Georgia. You’re a remarkable lady and I’m blessed to have met you in person because of FB! Thinking of you and hoping you’re well!!

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