Secondary Progressive Multiple Sclerosis

Around 2000, we believe Cir may have gone from RRMS to SPMS, or secondary progressive multiple sclerosis. In this form, the disease gradually gets worse. In between, there may be remissions similar to relapsing remitting MS. Or there may be plateaus where the disease stays the same for long periods of time.

When it started

Secondary progressive multiple sclerosis came on very gradually. It eventually became a turning point in Cir's life and ultimately our family life. Walking became more difficult. His right leg and right side became weaker, and he never fully recovered the use of them.

Cir went from working full-time to and then eventually to part-time. He used a cane at work; however frequent episodes of fatigue made it impossible to continue working even part-time. He had a sales job which he loved. The only thing about that was 90% of the time he was on his feet. Sitting wasn't an option.

In the men's department he needed to replenish clothing, service customers, and more; all on his feet. When he wasn't working, he still had to walk long distances. Falling also began to become an issue because of the hard fixtures around the department. Walking up and down the stairs was near impossible. And getting to the elevator and then to the lunchroom was a big problem because of the distance.

Incontinence was another issue he had to deal with. He had begun to make frequent trips to the bathroom. No one said anything, but for him it was an inconvenience and at times an embarrassment. He finally had to resort to wearing what he called "adult diapers" so he wouldn't leak while at work.

(Note: After he began to self-cathe, he didn't need to use them anymore. The term elf-cathe is short for intermittent self-catheterization.

This journey down secondary progressive multiple sclerosis was proving to be a big headache for him. I'm sure Cir would have described it a lot differently, because he was actually experiencing it.

The "BIG" decision

Near the end of 1999, he finally made the decision to stop working. We spent long hours talking about how we would make this work as a couple and as a family.

• How would we live?
• How could we make money if we needed to?
• How would we pay for insurance?
• What about the future?
  

We had so many questions and at that time, we had no answers. We didn't even know where to start to find the answers to our growing list of questions. That's when we found the National MS Society - NMSS. They actually had an office that was located right around the corner from our house at the time. We walked into the office one day and Cir became a member.

Among other things they helped us realize the many resources that are available to people with MS (or MSers as we fondly like to call them). That was also when we started down the long road of applying for social security disability insurance. 

At a standstill with Secondary Progressive multiple Sclerosis

We believe that he has stayed on the secondary progressive multiple sclerosis course until now. His disability was getting increasingly worse, though not as bad as some. But because of some of the alternative treatments he's been using, he feels that the progression has significantly slowed down.

Right now, it seems as though he hasn't really progressed at all. Or at least the progression is so gradual that we can barely tell if there is any worsening. Some say that after a while you get to a point where the disease just stops or freezes. Maybe you get to that plateau that we mentioned earlier.

The ideal patient

According to his doctor at the Oak Clinic, Cir is the ideal MS patient. Dr. Carrabine feels that if all of his patients were like Cir, he wouldn't have a job.

Cir's most recent MRI showed no new plaques or scars. He hasn't had a major exacerbation in years. He's had pseudo-exacerbations or worsening symptoms that didn't last more than a few days. But "knock on wood", as Dr. Carrabine would say, nothing major has happened in a long time.

Still no progression

Cir even had back surgery recently. Major surgery is not something people with MS go into lightly. Any type of surgery is a risk which may cause an exacerbation or even worse, permanent disability.

We talked about it for years before he finally decided to go ahead with the surgery. Fortunately, it did help the back problem. And so far, he hasn't had any flare-ups of any symptoms. He has, in fact, felt much better.

Update: Since the surgery, Cir has been diagnosed with what they call failed back surgery - which just means that it didn't really solve the problem. To this day, he still deals with back pain almost every day. He is extremely hesitant to go back under the knife, however, and feels he will just have to learn to live with the pain.

We're really grateful that even with secondary-progressive multiple sclerosis he seems to be pretty stable as far as the MS is concerned. We still take each day as it comes, but we're thankful more and more for the good ones.

About 10% of people who are diagnosed with MS begin with primary-progressive MS or PPMS. We are so grateful that this was not the case for Cir. With this type of multiple sclerosis, the person gets progressively worse over a shorter period of time. Click here for more information about PPMS.

You can learn a little more about SPMS here on the NMSS website. (Link will open in a new window).

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