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