What does my spasticity mean?

[Mable]

I was diagnosed 3 years ago with RRMS. I had double vision which resolved and a little stiffness in my right leg. I got on Copaxone and my MRIs have been unchanged ever since.

Over the past year or so, the stiffness in my right leg has turned into full-blown spasticity--my leg cramps up for a day or two after I do any exercise like swimming or walk/jogging. My neuro gave me Baclafen for it, and that makes it go away.

But shouldn't my neurologist be concerned that my leg is getting worse? I asked him if this meant I had progressive disease. He laughed and said, "No, I've seen you walk." Meaning that I pass all the neurological tests still--heel/toe walk, timed walk, etc.

But shouldn't I be concerned that my spasticity is getting worse? Doesn't it mean my drug isn't working or that I've crossed the threshold into progressive disease?

I would sure appreciate any insight you all have about this. Is some progression not a progressive form of the disease? Is it just what we can expect for the rest of our lives?

[rdmc]

Hi Mable,

Just because a certain symptom progresses, doesn't necessarily mean you have Progressive MS.

Progressive disease is disease that does not relapse/remit but progresses. There is Primary Progressive and their disease course is a steady downward decline.

Folks that are Relapsing Remitting can later be classified as Secondary Progressive. The difference being that during RRMS, you experience exacerbations and then recovery from the exacerbation (sometimes losing a little more function or adding a symptom with each exacerbation.) Secondary Progressive follows some with RRMS and in that case, the disease has ceased it's up and down course and the patient slowly progresses without remitting.

A symptom which progresses is simply a symptom which progresses. It does not mean that your MS has changed to Progressive. Usually adjusting meds for that symptom will help keep it in check. If you have a leg and your spasticity in that leg is increasing, your neuro may recommend a higher dose of your Baclofen or a different anti-spasticity med. But it doesn't not mean that your disease has become Progressive.

As far as "the rest of our life" issue...some have milder courses of the disease. Problem is you just can't predict who will and who won't. Richard Cohen (he's an author, was a journalist for years) says "progressive diseases progress"...and it's true, MS is a progressive disease. But we can't live in that thought...I have found much help through symptomatic medications, so when I have a symptom that gets worse, I feel the most important thing is to communicate that to your neuro and see if there is some sort of therapy or medication that can help with the symptom.

[Mable]

Thanks a million for your reply, RMDC. I read and I read, and I still never quite "get" how this disease is supposed to work!

[Nicoly3467]

Hi Mable,

I understand your concern and asked the same question to my neurologist this week.

I have RRMS, diagnosed Fall 2013 and lately my right side (calf, upper arm, forearm and foot) has become numb more often due to a small relapse in Sept & Dec 2014, but numbness has been off and on the last 3 months. I call these small relapses because I had a real bad one a year ago. My walking is affected during a relapse; I wondered too if I am progressing. The numbness might be something annoying I have to contend with now off and on. Some days leg spasticity is worse than other days too.

Normally, I have leg spasticity, some nerve pain, and fatigue so the numbness is new. My Neuro doc said I recover after these relapse episodes and my walking is not getting worse and worse, so he said it is not progression. I guess if I permanently was limping or walking differently after the relapse (never fully recovered) and numbness stayed all the time on my right side then that may be progression; I am just speculating though. This disease is such a mystery!
I recently had a brain & spine MRI and had no new lesions or changes, which is good news for the first time since I have been diagnosed; I take Rebif Rebidose.

I hope this info helped you in some way, because I (we on this site) know how frustrating this can be with all the "what if" questions of MS. The worry can be hard when new things come up, but always consult with your doctor about your concerns/symptoms and try to take each day as it comes (enjoying it too) and not think too far ahead in the future.

Take care of yourself!

[Mable]

Thanks Nikki. It sounds like some amount of new or worsening symptoms are acceptable then...not requiring a stronger DMT.

I wish early in my diagnosis, as I met various docs , I had asked them all, "What do you mean when you say someone is 'doing okay'" with their MS. What are the goals of our doctors with us really?

Does "okay" mean not able to work, but hey not peeing on myself yet? Or does it mean living to be 60 (I'm 53)? Does it mean no disease progression because we don't accept any amount of disease activity without going to more aggressive meds?

I'm getting my annual MRI in a couple weeks. I'll ask then.

[dream1649]

nuscle prolems

I have muscle problems that come from my right side and go up my shoulder and go up my head. I was wondering is this part of MS? I had my MRI'S done this week waiting to get the results.

Thanks
Jan

[SNOOPY]

Hello dream1649,

I have muscle problems that come from my right side and go up my shoulder and go up my head. I was wondering is this part of MS? I had my MRI'S done this week waiting to get the results.

If you receive a diagnosis of MS then, yes, it could be part of the disease. If you do not have MS then your "muscle problems", could be due to any numerous reasons.

There is no symptom that is exclusive or unique to Multiple Sclerosis.

[Skidder]

My experience

My understanding of spasticity is that the signals to the muscles and such are not timing out properly, or impaired. As a result, the signal timing can cause muscles to respond out of sequence. Your bicep trying to work at the same time as your tricep.

I have a lot of it all over. I have the MS Hug. I have episodes where it feels like I can't cough to expel something that may or no be there. I wake up unable to get oxygen at times because my diaphram and abdomen are impacted. When I lie down for a bit and try to get up, my legs flop around like, "The Lord of the Dance". It can manifest itself in a number of ways depending on how the nerves are affected and the severity. At times, I can walk without a cane or walker. At other times, I might need them to feel mobile.

My legs, left arm, and torso are all impacted with it progressing to my right arm. I take Baclofen, but it doesn't help much with the muscles, but does help with bladder/bowel and the frequency issues. As I progress, meds work less and less for it. It doesn't matter how relaxed my muscles might be. If they aren't getting the proper signal to function the way they should, no amount of medication is going to change that. Sort of, "I can't walk on water no matter how much Jello I throw in the pool."