Stories about Getting a Secondary Progressive MS Diagnosis

People with MS Share Their Experiences

Rehabilitation
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Many of us start out with a diagnosis of relapsing-remitting MS (RRMS), for some of us the day will come when our doctors tell us that we now have secondary-progressive MS (SPMS). For some, this confirms what they already had guessed from their worsening symptoms. For others, the diagnosis of SPMS brings a rush of emotions –- sadness, anger, disappointment, even guilt.

I asked people with SPMS to share their experiences in being diagnosed with SPMS, in order to potentially provide a stranger facing a new SPMS diagnosis a virtual shoulder to lean on.

Here is what they wrote: 

  • I went secondary progressive at the beginning of 2007. I had three jobs (yes 3 - 1 full-time, 2 part-time), and my mom suffered a heart attack. I instantly had diplopia and my walking went to hell. Driving all over the state (MD and also into DC for one of my jobs) was not good, but neither was stopping anything that was normal/routine in my life. Anyway, the walking never quite got better, and I was diagnosed w/ 2ndary progressive soon after. I've hated this diagnosis since the start because it's taken what it's taken in inches, ever so slowly that I don't *quite* see it, don't *exactly* see what's happening. I will say, since the SPMS diagnosis, days have been relatively more stable. I'm no longer afraid of the sudden flare up in the middle of the mall, on the highway, any old place. I mean, yeah, my walking may never be the same (even w/ Ampyra), but at least nothing *too* major has come up since then.
  • I have had MS for 30 years. I have great family support and currently on Tysabri. I was diagnosed with SPMS about 12 years after diagnosis. Positive thinking really helps. Everyone take care.
  • Diagnosed when I was 26, now I'm 53. Infrequent relapses over that time, but last one was a doozy. I used to ride motorcycles before (hand controls, you know), but don't feel safe now. I've noticed a slow progression over the last 5 years, but the last episode really kicked it up a notch. My Neuro won't diagnose me with SPMS as it would make insurance for CRAB drugs less willing to pay - especially the super expensive ones. He insists that I stay on CRAB as it might slow progression and disability down. Of course, not much research on SPMS compared or RRMS so who knows? I'm adopted with no family medical history, so my response to just about all medical issues is "surprise me!"
  • I was diagnosed at age 57 with primary progressive MS (PPMS) and then after a chart review of my medical file this was changed  to SPMS. I also was misdiagnosed for years and it was not until I had what was believed to be a stroke that an MRI was finally done and both brain and spinal lesions were found. I have mixed feelings about the medical error because I pushed myself to function until I just could not anymore. I have wonderful support through the MS clinic at the Foothills Hosp. but it is a tough road when for years it took me longer than the average Joe to recover from pneumonia, flu etc. I always felt like my family doc thought I was malingering. I had all the bladder and bowel issues also but learned to just push myself through. I am now on disability. I use a walker and for the first time I am focusing on developing to my physical potential. I have spent lots of time on the spirit and mind. Now it's time to nurture the physical.
  • I got my first symptoms of MS at 16. Progressed gradually. It has been so helpful to have a caring doctor. Quite a few years ago I received a definite diagnosis of Secondary/Progressive MS. Having read a lot about MS, I wasn't surprised. In a wheelchair 33 years but very active, keep house, very independent, with little help. I'm 81 yrs. old, love life and enjoy it. Lots of pain and on pain medication. I always keep busy. I knit caps for children and donate them to various organizations. It is very important to keep busy and do things for others. I'm active in church. Without God in my life, I wouldn't be able to do all that I can for myself. I'm fortunate to have a friend who lives with me and helps when I need her. I'm home by myself most days. I found out years ago the importance of learning all I can about MS, especially on the Internet. E-mail has been a very useful thing for correspondence. I believe life is what you make it. Never give up.
  • I was diagnosed at age 62. When I was finally diagnosed, it was clear that I have had RRMS since my 30s - at least! Yet, no doctor - neurologist, urologist, etc. - ever put together the symptoms I was having and connected to the answer. For me, it was finally an answer to all of the problems I had been dealing with for about 25 years - and I think even longer. Why had no doctor picked up on the on the diagnosis? Even my urologist suggested that I had MS, but my current neurologist said I did not! It took a wonderful, alert Internal Medicine doctor to go to my Neurologist and say, "This lady has MS!" Thus, tests began that led to a diagnosis of what I had been living with for at least 25 years. When I transferred to an MS specialist doctor with the University of Texas Health Science Center who is on the MS Research Team, her first diagnosis when she looked at my brain MRI, was that I was already in SPMS. All I can say at this point is, "Why? Why did I go all those years?"
  • I was initially diagnosed at age 47 with RRMS when I had a multi-symptom flare-up. That was my only relapse. Made me wonder if I actually had the disease, but over the course of the next 4 years, my physical condition has deteriorated, particularly walking and bladder/bowel issues. Only at my last doctor visit, with a different neurologist was I diagnosed with SPMS. I was told there currently was no treatment for it but to continue taking the Copaxone. I don't know if this is supposed to slow the deterioration or what. My last spinal MRI did show new lesions in the thoracic area, but that is all. I still question, do I actually have MS the form where you have a first relapse and then symptoms but no further relapses. I hope this is an answer to my question. I'd like to know if or when there is a treatment available for SPMS.
  • I have had so many ups and downs with RRMS, I think I had SPMS long before it was diagnosed. Every 3-4 months I would be in the hospital on iv solumedrol - most often I was paralyzed (or close to it) from the waist down. This past spring through fall I was in the hospital every other week, for a week at a time. During those months, I had 15 separate attacks. Each one devastating, attacks included being paralyzed from the waist down, incontinence, then I couldn't think. I was sleeping 21 hours a day (on 1,000 mg solumedrol, mind you) had tingling all over my body, developed optic neuritis, one attack affected every pain nerve in my entire body. If you touched me I would black out up to five minutes, the pain would also send me into convulsions while I was blacked out. I had to use a wheelchair, a bedside commode. One episode laid me in a coma in the critical care unit for a short time...all from MS. I never knew it could get that bad. Finally, my neuro started me on Novantrone, a chemotherapy used for SPMS. 
  • I knew it was going to happen since my relapses were closer together. I had MS over 25 yrs, always worked (we farm), raised kids, horses, the CRABs never touched me, made things worse. I am just hanging in there, my husband is my rock, 2 sons are mother hens, a rollator, walk/in bathtub, lift chair, makes my world easier, plus someone to help me clean house.
  • I was diagnosed RRMS 26 years ago. My husband developed cancer 1n 1997. The stress I endured changed my MS to SPMS, so no one can tell ME that stress does not influence MS at all.

Bottom Line: Much like MS in general, the diagnosis of SPMS is tricky and can often take years to confirm. The eventual diagnosis of SPMS is typically not a surprise for people who have been living with MS for years. 

Read more about progressive MS: 

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