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..

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.

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.

Damn disease and it's experts.

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.

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

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.

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

There's that 10 year thing again ...

What do they say happens after 45 years, Jack?