RRMS to Secondary

[greaterexp]

For those who have moved into SPMS from RRMS, what was the time interval between the two? I realize many of us found out we'd had MS for a long time before diagnosis, and our experiences are all different. I was asked that question and couldn't give much of an answer.

[WAshingtongirl]

For me, it was 25yrs from my first MS symptoms, but 16yrs since diagnosis. My neuro told me that age is a good indicator. (I'm 59.) Also, my MRIs are 'stable' but I am slowly progressing-not bouncing back to where I was before. And my last round of steroids (5 days with 2 week oral taper) did little to improve my symptoms. She said all those factored into changing me to SPMS.

[erash]

greaterexp

I've had no new lesions X diagnosis 9 yrs ago. Progression of symptoms seemed to snowball in the last 2-3 yrs. but as you mentioned, I likely had my first symptoms in the mid 1980s. I think SPMS is an elusive distinction?

[greaterexp in reply to erash]

erash , I agree about the lack of clear distinction, though my neurologist feels strongly that the current classifications are clearly separate. That doesn't seem to easily match many actual experiences. Hmm... There isn't much about this disease that seems truly clear cut!

[CalfeeChick CommunityAmbassador]

My Dr. Still declines to classify a stage. The 20+ white spots in brain have not changed size or shape in last sets of MRI's last October and lastg April. Because he does classify lesions T2-5 as MS, I have MS. I've been hearing/reading a little about a classification called CIS, it's all in one place. I think it was CIS. Hope you are all doing well.

[kdali]

Thanks for asking this! I was wondering what everyone's time frame was until their progression. I'm RRMS, but I had a CIS 15 years before being diagnosed, MS symptoms for the past 7 years, and diagnosed for almost one. When do they start counting?! If the average is 15 years to progression, for example, would I expect to have 8 or 14...? 😵 "Expect" is a joke here, this is MS we are talking about 😂😜

[greaterexp]

I, too, had an apparent CIS about 20 years ago with symptoms that took about 18 months to go away. I've had other symptoms over the years, though not nearly so pronounced. I had my first real relapse last summer/fall with a diagnosis in September. The MRI of the brain showed multiple lesions in my brain. So when did our MS actually begin? Good question.

[CalfeeChick CommunityAmbassador]

Oh Gosh, didn't realize others had the CIS. Does this mean I get to live another 15-20 years, then get the DX? I'd like to hear about your experiences with the CIS..

[kdali in reply to CalfeeChick]

The natural history of MS says 50% of people who have a CIS will go on to develop MS within 15 years of having one. It's not helpful knowledge because you have as much chance at having MS tomorrow as you do never.

[kdali in reply to CalfeeChick]

mymsaa.org/videos/closerloo...

Here's some more info on CIS.

[greaterexp in reply to CalfeeChick]

CalfeeChick , it's been awhile, so I may be forgetting something, but I do remember having the sensation of having a band around my left great toe. The feeling of weakness gradually rose until I actually felt one night that I had to think about breathing. The weakness very slowly receded, but I would have painful electric shock sensations, particularly in my left arm. I began wondering about Guillain-Barre Syndrome. The weakness of my legs and arms took about 18 months to go away. The symptoms were much worse when we visited in the summer in Texas, especially after I got into a hot tub to ease the pain in my legs. I saw the neurologist after we got home, but the MRI was negative, as was the CSF. He suspected MS or a brain tumor, but with the tests being negative, he just told me that medicine doesn't always have an answer. I think he thought, and I began to believe, that I had become an outrageous hypochondriac. My main symptoms since then have been a deep aching of my legs at times and continued migraines. I attributed muscle spasms in my back to lifting too much. It wasn't until the relapse that the symptoms became very clear and the MRI showed multiple lesions. Exactly when those lesions had formed, I don't know.

[kdali in reply to greaterexp]

@greaterexp You just reminded me that I had muscle aches and spasm in my back, mostly one sided. I blamed it on work, and the neuro that misdiagnosed me said I had a teeny herniation. The radiologist did not see that, and neither did another MD who suggested I was told that so I would be on my way. Eventually I had multiple cord lesions, but never put the two together...so thank you!

[rlh1974]

greaterexp for me it felt very very quick. But my problem was I had it for way over a decade before diagnosed. My Ortho missed it. The lesions are on all my MRI's but they were looking for injury. Not lesions. So when I was dx'd even though they said it was RRMS it was actually SPMS because none of my symptoms have stopped since before the DX. I had no chance for the disease modification drugs to work. SO for me, it was about 10 years before I progressed. Maybe longer. Now they are actually talking about that is has progressed to PPMS. Hope this all makes since,

Rob

[CalfeeChick CommunityAmbassador in reply to rlh1974]

Thank you Rob, will pray for your that progress slows.. Yes, it makes allot of sense to me. I take symptomatic drugs for the numbness/tingling and for focus, ms fog. They help and I've had to increase the gabapentin from 3 to 7 capsules a day. The numb/tingling has lessened, but never gone away. If I overdo it, it goes from feet to ribs. Very uncomfortable. Grateful for this group and being able to discuss MS with others that understand. Blessings, Lynn

[jimeka]

I think because of my age at the time of dx they automatically said mine was PPMS, if I hadn't have fallen off my horse and damaged my spinal cord, I wouldn't have known about it until maybe a year ago. 🦋 🌈

[CalfeeChick CommunityAmbassador in reply to jimeka]

That's a heck of a deal. From doing something you love to getting the diagnosis. Because I've just recently turned 69, I will for the third time undergo all the MRIs etc. this fall for the third time and wondering if I'll get any change or actually get a definite diagnosis. 🌈🦋🌈🦋💞 Lynn

[agate]

I was diagnosed in 1980 after a couple of years of disabling symptoms that weren't going away. Back then if there were classifications of MS into RRMS, PPMS, SPMS, the doctors didn't mention it. You either had MS or you didn't. But I'm pretty sure mine was already SPMS by 1978-1980. The neuro who diagnosed me thought it could be traced back to 1961, when I had my first vertigo episode, followed by some other weird symptoms that went away between that time and 1978. So it was 17 years.

[Amore55]

My experience was similar to Tutu's I believe. I was very sick in 1990, couldn't walk or even feed myself. And I had seven small children at the time! We saw about ten doctors until finally I got diagnosed with chronic fatigue syndrome. Of course I believe it was ms, but no one tested me for it. Now my neuro and I both agree that I probably have SPMS. I never improve or have a "break" from what feels like a constant relapse. But he is careful what he notates for fear of what the insurance would do. I hope everyone is feeling good and staying cool. It's 100 degrees here in Salt Lake tomorrow, well actually today as it is after midnight 😝!!!!! Kelly xx

[Hidden]

It took the doctors (in 1975) about 5 years to make my MS diagnosis of R&R MS. I went into SPMS about 10 years later. I got breast cancer and the chemotherapy seemed to delay my MS progress and kept me walking another 4-5 yrs. My SPMS is slow progressing but relentless. I was never given any of the ABC drugs (the pills were about +$1,000 mo/insurance would not cover) so others had a better chance than I did. I did go into a powerchair in 1980 (we have a HC van/ramp) which has added to my quality of life. I do get to participate in life and have various activities and I am an active grandma (I am 68 yrs). I have driven all of my 12 grandchildren around.

[greaterexp in reply to Hidden]

Hidden , you are a real marvel! It encourages me to read how well you've coped through the years and how you overcome MS to lead a very full life and to be so involved with your family. What a blessing!

When are you writing your book?

[CalfeeChick CommunityAmbassador in reply to Hidden]

You are an awesome lady👍

[Marcia2901]

Thanks so much to you all. I am new to MS (diagnosed Aug 2016 with SPMS) and have learned more from your posts than I have from my neurologist and the Internet. But I'm having trouble understanding some of your acronyms! Could one of you please tell me what "CIS" is? I'm 69 and had symptoms for 5-6 years before I was diagnosed. I was tripping with my left leg a lot and had a weird sensation down my my leg too. I wasted a lot of years seeing different Orthopaedic docs thinking it was something going on with my hip. Finally a contienious doc sent me for MRIs and found the lesion on my spine. It took another year or so to find a fantastic neurologist at Duke who took an interest and was determined to figure out was what wrong. My MRIs have not changed but my walking has gotten worse. Its slow and my balance isn't good. I'm now using a cane and that makes me feel more secure. And the heat! Don't get me started on that🙄. Again, I'm so happy to have found you all. It's nice to know I'm not alone.❤️

[WAshingtongirl in reply to Marcia2901]

Hi, Marcia2901 . We're sorry you have MS, but happy you found us. Someone else here can better answer your question, but I wanted to welcome you. We all hope to get to know you better! 💕

[Marcia2901 in reply to WAshingtongirl]

Thanks for the welcome. I'm so glad to have found this website.

[greaterexp in reply to Marcia2901]

Marcia2901 , you might be interested in an internet search for CIS, but I think in a nutshell, it is Clinically Isolated Syndrome. In general there is an episode of MS-like symptoms, but with minimal lesions in an MRI. I think the vast majority of people who experience a CIS go on to develop MS. I wonder if some day, the CIS diagnosis will disappear and be simply MS.

[CalfeeChick CommunityAmbassador in reply to greaterexp]

Perfect definition @greaterexp!!

[Marcia2901 in reply to greaterexp]

You all are wonderful -- thanks so much.

[kdali in reply to Marcia2901]

Here's a great video on CIS:

mymsaa.org/videos/closerloo...

[Marcia2901 in reply to kdali]

Thanks Dali. That video was very informative. Appreciate the help.

[Marcia2901 in reply to Marcia2901]

I meant kdali -- sometimes I hate autocorrect!!

[kdali in reply to Marcia2901]

You're welcome!

[WAshingtongirl in reply to kdali]

Excellent resource, kdali ! Thank you!!!💕

[goatgal]

greaterexp I have no idea of which type I have, and neither does my neurologist. Believe me, I would like to know. Symptoms of MS have been there almost my whole life, but both true exacerbations (ON, TN) came before I was diagnosed (blood work, MRIs, LP all confirmed) at age 70 seven years ago. Although my balance grows slowly worse, my gait is impaired and some days struggle to walk, and I have numerous pseudo exacerbations, my neuro says probably relapsing remitting. She said that at this point whether it's age or MS it's much the same. Either way, my wiring system is faulty and not going to improve. I can never answer that question. Actually, it's embarrassing to be asked because a) usually someone who asks apparently doubts that I really have MS, b) sometimes it seems as if my symptoms/struggles/difficulties don't really measure up to some implied standard, c) I'm beginning to look old, so it must really be old age and not MS ("all old people..."fall, grow confused", etc.). As you may note, I am becoming defensive on the issue. Since it's real to me, I am not sure that it really matters if it's real to anyone else!

[greaterexp in reply to goatgal]

goatgal , since joining this site, one of the most often expressed frustration is that of not being taken seriously or of having the disease minimized or dismissed. I'm sorry you've had so much experience with that. MS is such a bizarre process, so it is more difficult to diagnose and harder for friends or strangers to comprehend. I pray that someday there will be one definitive test to make diagnosis clear. We certainly learn patience in dealing with people who can't understand what MS patients go through!

It's a real blessing to have this chat room and be connected here with empathetic and encouraging people.

[goatgal in reply to greaterexp]

greaterexp Your response exemplifies the extraordinary generosity of those who respond on this site. Here, responses are unfailingly kind and supportive. This is the only place, other than my neurologist's office where I air my issues and emotions. I completely understand how fortunate I am in that I am not more obviously impacted, so I try not to kvetch about my difficulties. MS marks some of us in obvious ways, but every one of us experiences some degree of mostly invisible isolation.

When we respond to one another, we are befriended. Thank you. If everyone could demonstrate the compassion, empathy, and support of those on this site, the world would be a greatly better place.

[Hidden in reply to goatgal]

Have you been to an MS specialist or MS clinic? It is a good idea...I am old too so I understand you questioning your impairments, however, the symptoms you talk about are not old age but are some type of injury or disease. I am SPMS and there is no medication for it whereas with RRMS, there is. You probably have another 20 years so it is worth it to find out, you think?

[goatgal in reply to Hidden]

lindance Thank you for your concern. My neurologist sees only MS patients at a University which has a specialized MS clinic. She tried ampyra, but I reacted adversely. My MRIs show no new lesions since diagnosis. I agree that I have another 20 years ahead...so the goal is to stay upright, alert and appreciate the glory of each morning.

[jackgaume in reply to goatgal]

Ditto you described my issues well.

[Russso]

I was diagnosed in 1997 after goi g to the ER 3 times and being sent home they were a aying there was nothing wrong. I was up graded to SPMS in 2015. My ? To others are you on a the same meds because my Neurologist hasn't changed my medi since the SPMS.

[BillD999]

greaterexp , erash , We seem to keep returning to this discussion about the distinction between RR and SPMS. I'm not sure anyone has a good answer, maybe because there really isn't a clear distinction. My own experience is that I had a few undiagnosed episodes of numbness between 1980 and 2003 or so, when I started to notice weakness in my left leg. In 2005 I had vision problems after having the flu that led to my diagnosis. Even though that was a pseudo exacerbation (because of the fever), they classified me as RR. No relapses after that and it was a couple of years before my dr at the time made the call of SP. MRIs have been stable since diagnosis although progression has been steady.

I don't have relapses, but I certainly have bad days, as well periods when I am aware of increased disease activity, when progression seems to be in high gear. I sometimes bounce back from these, sometimes not so much, so they are not relapses by definition. Once again that fuzzy line between RR and SP.

[kdali]

The switch is not flipped from one stage to another overnight. There is a (fuzzy) period that feels like relapses with sustained disability, albeit less disability than when the relapse started. The MRI lesions will not enhance with dye once the inflammatory stage (or RRMS) has ended. While someone is progressing (progression is the land of fuzziness and who knows how long someone will live there) to the degenerative stage (SPMS: which also mimics rapidly advancing old age) the RRMS medications may still provide benefit. There much written about the stages, some great videos on YouTube, and MRI images online that demonstrate this! Don't just take my word for it 😁