RRMS to SPMS how did you get there?
 

I have been dx as RRMS since 06. Lately I have been having flair after flair, and I am not reaching full recovery between flairs. its been a wild ride! Im tired, and a bit worried.

They are talking about advancing my dx from RRMS to SPMS. What does this really mean? What will it mean for the course of my disease, or treatments? Has anyone here done this?

What advice, or information can you share with me? Im freaked out! :eek: I go tomorrow to the big girl hospital and they are going to "talk to me" and try to convince me to get on the "steroid train" EEEK! :eek:

Calm down, if it is the case, freaking will not help the matter one bit.

I graduated to SP a few years ago. I don't have exacerbations anymore and frankly, it's a relief. Mine were colossal whoppers lasting many, many months at a time.

After 13 years, I went off the shots completely in July '07, don't miss 'em.

Now and then I have a spurt of extra-sluggish days, painful nights, or cognitive fallout and I go for an IVSM which still helps me a lot.

You've seen that I've managed to keep going, albeit at a much slower pace, but go I do.

Definitely do not freak out :winky: It never helps.

I've wondered about that as well. I have had constant pain in my hands for over a year. Steroids don't touch it, but Lyrica helps. What does it mean when a sx doesn't go away? Does it mean I am advancing to SPMS? And what does that mean?

I thought it would be bad news to be "upgraded" to SPMS, but it seems it doesn't really change anything. You still go through the same meds, continuous sx. It just means some symptoms don't go away. I have sx that never seem to resolve.

I'd be interested to know if anything changed for anyone when their dx changed from RRMS to SPMS.

I'm wondering the same thing, Dej.

I honestly don't think my Neuro knows, either. I've asked him before and he always dances around the answer.

My sx change so much. Some days are better than others. I try not to think on it too much. Because it is what it is......regardless of what it's called. :rolleyes:

You see my story on your other thread. :)

IVSM is meant to stop inflamation and thus end your flare, before any or much permanent nerve damage is done and supposedly There are no inflamations/flares with SPMS

So, with the exception of RPMS-remittive progressive MS, where you still have inflamation, IVSM does little more than a placibo.

If you and your Doc think you are having inflamation, then try ivsm, it may work for you and I hope it does. :hug:

I dunno, I was dx'd in oct of 2008... and the darn flair never remitted. So I am no longer RRMS but the doc can't tell me if it is SPMS or PPMS. I am expecting the latter seeing as every single MRI (all 17 of them) have shown new lesions. But, she doesn't want to speak of PPMS because it would mean my insurance will not cover any of the drugs that she is using to try to slow the progression.

I agree, don't freak out. The good news is you wont have as many flairs and crap like that. The bad news is you begin steroids and the slow decline and whatever else the experts like to say (being sarcastic here). :rolleyes: Everyone is different so don't panic. No two are alike and no two ever will be.

I am sorry it's happening to you but really I think you'll appreciate not having flair after flair so close together. I know Jim did and many others too.

To answer your question Jim was dx'd rrms the first five years. Because of his progression and constant flairs with no improvement they up'd him to spms. Somewhere in between the experts (more sarcasm) even said he had ppms, rare form, chronic progressive ms, blah blah blah. It seemed no one could agree. But, and I think I mentioned this before, we finally told them to put a name to it and stick to it. They did and now say spms. :D

It's just a classification really, something they use to gauge your progress or lack of, I guess. Either way :hug: to you. I am sure nothing we say will make you feel better because it's happening to YOU. Jim may be in a wheelchair but not everyone goes in a chair. We try to live life to it's fullest regardless of the changes and obstacles. :hug:

My neuro was reluctant to go ahead with documenting SP over RR because, as Legz mentioned, coverage changes on meds and the docs want us to have access to all options as they come down the pike.

What was happening with me was that I hadn't had a full-blown attack in five+ years but was getting new lesions every year (on shots) and steadily & obviously progressing. After a few years of the same, she finally said I could quit the shots and a year later, she changed my label.

Sal, I beg to differ (PALLEEEEEEEZZZZZEEEEEE!!!!!!! let me differ!!!), IVSM still helps me when I feel like I've been run over by 11+ military tanks instead of 10. A three or four day course gives me enough of a lift in energy and coordination, it really helps me out of that quagmire. Since SP, the most I've had is two 3-day courses in the same 12-month period.

OK OK, ya little brat, I'll let ya have yer IVSM fix. It means that you are having inflamation, so, maybe you haven't had the full SPMS transformation.

Huggy poo..:hug:

Not to make a fuss but Jim took steroids way into his spms too. I have always understood that ms is an inflammatory disease. I recently read a study that suggested inflammation in secondary progressive multiple sclerosis is higher than in rrms. Then I read a study suggesting that while inflamation is more promanant in rrms that it can still become active in later stages. Who the heck really knows. :p

To be honest I stopped reading studies and such unless it is about spms or ppms which we all know are few and far between.

The doctors stopped giving Jim IVSM after kidney failure but more recently brought it up again for his fatigue and leg pain to see if it helps. Hmmm.

Ack, it's all irrelevant in the long run since everyone reacts differently anyway. Jim's botox doctor told him medical mj is probably a euphoric response rather than a physical response. He disagreed and started to take it personal. I spoke up and said "So what? If it works for him euphorically or not it works, right?" She agreed and didn't say anymore. :D

Damn disease and it's experts. :rolleyes:

See how confusing it all is Dej?

My MS Neuro said people can be SPMS with relapses. They still give the DMD's to anyone who still relapses even if SPMS. What determines this is if there is progression on MRI and still having relapses.

Some people can have Relapsing-SPMS with a very slow progression. Others may progress more rapidly. That is why I do the IVSM. It takes me back to my original baseline.

I hate relapses but I know I have inflammation and need IVSM to calm down my immune system and stop it from attacking me. I am still RRMS by this Neuro.

Well, I am off to the big girl hospital, and am going to get my lecture, and have to decide if I want steroids (they wont force me) and will hear all about their current line of thinking.

I hate this disease. :o

Good luck, Dej. I hope everything turns out good for you. You do what you feel is best for you. :hug:

The big girl hospital said that while they truly believe me to now be SPMS, they dont really wish to put that label on me, because it changes how the insurance companies deal with you, and other advantages that I have as an RRMS patient. once given the SPMS label, they would have to really change gears, and I would lose out on several chances that I have as an RRMS patient. The FDA wouldnt let me continue on some treatments,and would be quite strict with other stuff.

I understand why they are saying that, but ...then again...I give up. I dont care what they call it, as long as they dont quit on me.

Going to the local spot for IVSM tomorrow. I was told that SPMS can have inflammation continue and that it simply means that there is less time between flairs, and that it eventually rolls into just one big ball of "this is the way its gonna be" the rollercoaster sorta levels out, from big high, and big lows, to level rolling. Since MS is an inflammatory disease by definition, steroids are a normal part of treaments for SPMS in THEIR hospital. i was told all hospitals do it differently, and that some believe this, while others believe that, but since I am in THEIR hospital, I am going to get THEIR explaination. So...here we go.

Thanks for all the support. :grouphug:

Dej, I wish you lots of luck and hope you start very soon to kick MS in the butt with the IVSM. Don't forget to eat well before you go so the steroids don't kick your butt.

Wishing you the best. :hug:

I've been out of the loop for a while Dej, sorry. I'm shocked to catch up with your news and hoping you can overcome this setback. Take care of yourself.

MS is a TWO (2) stage disease
 

MS is a two stage disease

1st is the INFLAMMATORY PHASE.

2nd is the DEGENERATIVE PHASE

I have read from several sources that it takes about 10 years to go from PHASE 1 to PHASE 2. This might be modifed(extended or cancelled) greatly by taking a Disease Modifying Medication.

The BAD actors that are targets for reduction in PHASE 1 are seen in the below figure are Gamma Interferon, TNF-a, IL-12,IL-6 and MMP-9s.

In PHASE 2 the target for reduction is "EXCESS GLUTAMATE".
.
Multiple sclerosis: a two-stage disease by LAWRENCE STEINMAN
.
http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf


jackD

http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg

There's that 10 year thing again ... :mad:

What do they say happens after 45 years, Jack? :D

You asked for it!
 

Here is my response for you. Remember you asked for it!

In about 85% of MS folks the 10 year rule applies (taking a Disease Modifying Medication may extend this for many years)

MS is a two-stage disease, with initial attacks of inflammatory demyelination, which damages myelin, followed approximately 10 years later by a slow, progressive neurdegenerative phase marked by loss of axons and nerve cells.

The results of this is noted by loss of the ability to walk. Some MS folks do enter this 2nd phase directly.

The final results is that in about 45 years we end up with having some real nasty ODD-D MS folks - ODD Old Demented Deranged folks with BIG Disability ratings in wheelchairs.

So cheer up things WILL get worse.

Some may want to explore what can be done to lower the excess Glutamate which our own diseased bodies produce that does this bad stuff to our axons and nerves. This is a pure "damage control" approach.

Of course if you have the cure for MS this would not be necessary.

jackD

LOL, Jack. I don't seem to follow your hypothisis, so far...thank God. :)

And I hope you stay that way, too, Sally! :)

MS is such an individual disease. If the researchers know enough to state so emphatically what it definitely is and isn't......then why can't they find a cure or at least a DMD that works well for everyone? :confused: Just sayin'...........:rolleyes:

11,236 transected axons per cubic millimeter= DAMAGE
 

MS is more than a demyelinating disease! It also involves massive death of axons and neurons as the disease progresses beyond the myelin damage stage resulting in irreversible neurologic impairment.

jackD

N Engl J Med. 1998 Jan 29;338(5):278-85.

Axonal transection in the lesions of multiple sclerosis.

Trapp BD, Peterson J, Ransohoff RM, Rudick R, Mörk S, Bö L.

Department of Neurosciences, Lerner Research Institute, Cleveland Clinic Foundation, OH 44195, USA.

Comment in:

N Engl J Med. 1998 Jan 29;338(5):323-5.

BACKGROUND: Multiple sclerosis is an inflammatory demyelinating disease of the central nervous system and is the most common cause of neurologic disability in young adults.

Despite antiinflammatory or immunosuppressive therapy, most patients have progressive neurologic deterioration that may reflect axonal loss.

We conducted pathological studies of brain tissues to define the changes in axons in patients with multiple sclerosis.

METHODS: Brain tissue was obtained at autopsy from 11 patients with multiple sclerosis and 4 subjects without brain disease. Fourteen active multiple-sclerosis lesions, 33 chronic active lesions, and samples of normal-appearing white matter were examined for demyelination, inflammation, and axonal pathologic changes by immunohistochemistry and confocal microscopy.

Axonal transection, identified by the presence of terminal axonal ovoids, was detected in all 47 lesions and quantified in 18 lesions.

RESULTS: Transected axons were a consistent feature of the lesions of multiple sclerosis, and their frequency was related to the degree of inflammation within the lesion.

The number of transected axons per cubic millimeter of tissue averaged 11,236 in active lesions, 3138 at the hypocellular edges of chronic active lesions, 875 in the hypocellular centers of chronic active lesions, and less than 1 in normal-appearing white matter from the control brains.

CONCLUSIONS: Transected axons are common in the lesions of multiple sclerosis, and axonal transection may be the pathologic correlate of the irreversible neurologic impairment in this disease.

PMID: 9445407 [PubMed - indexed for MEDLIN

In about 85% of MS folks the 10 year rule applies (taking a Disease Modifying Medication may extend this for many years)

:mfr_wha: And what's that percentage for people ON DMD's?


So cheer up things WILL get worse.

:Bang-Head: Well aren't we a ray of sunshine!!!

I have been dx in 2006, but can trace back my first huge flair to 2001. that makes 9 years for me.

The big girl hospital told me that SPMS has an inflammatory component to it, and they do keep trying steroids as long as the patient shows improvement with the infusion (which I am) and that they will even continue some RRMS treatments such as copaxone. They just really hesistate to move someone to that catagory, unless they are kinda forced to.

One website said inflammatory follows all the way through, and one says NOPE, its only in RRMS, and yet another give a mixed view. If nothing else, this disease has confused me thoroughly.

Thanks for the spiffy drawing! :hug:

http://images.mylot.com/userImages/i...tos/851390.gifhttp://www.family-vacation-getaways-...gSmileyGIF.gif

My first BIG flare was in 2003. Both of my legs were numb and I assumed I had a pinched nerve. No other sx....jut the numbness. So I guess I've actively had MS for about 7 years.

It was two years after that first big flare that I had my second (even bigger) flare. Double vision, numbness, balance, etc.

I tend to think I'm probably SPMS, too. But, my neuro hasn't changed my dx status.

Right now it seems that the visual sx are what I predominately have. If I had to choose, I would have something be numb (besides my right hand/arm. It already is.). Visual sx are awful.....they affect every aspect of your life. Not saying the numbness is any fun.....but at least I can see where I'm going. :rolleyes:

There are exceptions to every rule, including Jack's favorite 10 yr rule.....and after all, most of us are exceptional, aren't we? :cool:

I had my first big exacerbation in 1975 with SX back to 1964. I didn't become SPMS until around 1998. I'm not in a WC, although, I use my scooter most of the time.

I think my age is now in the SP stage, too, though.:p

I've had just one truly massive, disabling flare and that was in 1995. It got me diagnosed, although I had dealt with symptoms coming and going for 4 or 5 years prior.

The primary area of attack for me has always been my legs. Some time in 2003, without any noticeable flareup, my walking and balance just started getting worse. In my opinion, that increase in disability without a distinct flare was the hallmark of becoming SPMS.

However, I have had flares since then, too. But also a gradual progression of disability. This could be because the attacks keep hitting the same areas and I end up with axonal damage. Or that glutamate thing that I don't quite comprehend yet (must read more).

At any rate, I think it stands to reason that repeated myelin destruction in the same areas along a nerve axon will result in permanent effects. All the more reason to battle inflammation and modify disease activity as we are able.

The big MS center is now having a huge debate over me. Since they have figured out that my "MS hug" or "flipped intestine" or whatever this is that keeps happening is actually pancreatitis, it may have been keeping those exascerbations going, and there fore, may not be a "true SPMS" so, for now, I sit and wait for this latest event to settle itself, and get over the latest insult, before they re evaluate what is truly happening.

Just like any infections, colds, stress, or whatever can keep MS stirred up, I bet this whole thing has been stirred from the pancrease thing. :mad: