Different types of MS

[Puellapea]

I have not been diagnosed with MS, but it's on the short list of possibilities for me and I have a question. How do the doctors determine which type of MS you have? Do they know right from the time of diagnosis?

[Kimba22]

It takes time to determine which type of MS someone has.

Once they figure out you have MS, the neuros usually diagnose it as relapsing-remitting. If it's another form, they need more time to factor in your history of relapses (or lack thereof), your progression, and any changes in your MRI scans.

Even if they suspect you have another form, the neuros usually still list a person as relapsing-remitting so he/she can be approved for DMDs.

[Puellapea]

Thanks. Stupid question but what's DMD's?

[Cat Mom]

Absolutely not a stupid question. It stands for Disease Modifying Drugs... Like the injections, tysabri and the new orals.

On a different topic, in the General Questions section, on the first page that's called Abreviations and Acronyms. It sure helped me out lots as they are used frequently on the Board.

Hope this helps,
Jen

[JerryD]

There are several forms of MS. Generally, MS is broken down into 4 types. 1) Relapsing-Remiting, 2) Secondary Progressive, 3) Primary Progressive and 4) Progressive Relapsing. I have seen that some lists include CIS ( Clinically Isolated Syndrome ) with these forms.
There are no FDA approved DMD's or DMT's to treat the forms, other than Relapsing-Remitting. That's probably the reason neurologists try to 'shoe horn' all possible patients with MS into that category. If it is determined that you have the Relapsing form of MS, you should take advantage of the DMD's. But if it turns out that youn have one of the other forms, you probably should not take the drugs, since none have been studied as a treatment for these other forms.

[MSer102]

I'd like to add a couple of things.

There are no FDA approved DMD's or DMT's to treat the forms, other than Relapsing-Remitting.

The injectible drugs Avonex, Betaseron, Extavia and Copaxone are all FDA approved for the treatment of CIS with MRI findings consistent with MS. The FDA is reviewing the CIS trial results for Rebif and it will probably be approved for CIS as well. http://www.nationalmssociety.org/abo...cis/index.aspx

But if it turns out that youn have one of the other forms, you probably should not take the drugs, since none have been studied as a treatment for these other forms.

As I just covered, Avonex, Betaseron, Extavia and Copaxone are all approved for the treatment of CIS. Some of the injectibles and other immunosuppressant medicines HAVE been studied for primary progressive MS. These medicines all work to affect inflammation and it was found that they don't work very well or at all in PPMS since PPMS isn't primarily an inflammatory disease.

They aren't prescribed because they don't work, not because they haven't been studied. It was only from those studies that researchers found out they don't work.

Rituximab (Rituxan) was studied in PPMS just a few years ago and there wasn't much success. It was found to help only for a short time in younger patients whose PPMS had an inflammatory component.

IVIG was studied in PPMS and found not to have any benefit.

Plasma exchange was studied in PPMS and found not to have any benefit.

Many of the MS medicines are used in secondary progressive MS because they are still helpful in patients who have inflammatory relapses. The line between relapsing remitting and secondary progressive is pretty blurry. As long as a person is having relapses and remissions they can still be considered to be relapsing remitting even if their inability to recover from relapses and progressing of symptoms also puts them into the secondary progressive category. Whether a medicine is approved for secondary progressive becomes a moot point.

I know that a lot of people with PPMS feel that the money grubbing drug companies are refusing to test medicines for PPMS because there's no money it, but the small studies of the medicines inn PPMS show that that's not the reason. The studies already show that the drugs have been tested in PPMS and they don't work. That's not the fault of the drug companies.

Researchers don't even know yet how PPMS works so finding medicines for it are an expensive hit and miss. When the researchers get a better idea of how PPMS works they'll have a better chance of developing medications that are effective for treating it.

[Puellapea]

Can anyone tell me: if there is a "most common" type of MS, and if there is one type that's "better" than others to get?

[Cat Mom]

I think more of us originally get dx RRMS, there are distinct flares with symptoms at least "calming down" in between. 50% of RRMS patients will be SPMS after 10 years, 90% after 25 years (that staistic is right from MS Society Canada newsletter).

MS is a progressive illness unfortunately. I'm doing everything I can to be one of the 10% that's not progressive after 25 years... I'm lucky to be on a med that has worked for the last 6 years.

I hope with new meds being introduced that the statistics will improve.... or a cure, that would be awesome, but not holding my breath.

Jen

[JerryD]

As I understand it, Relapsing-Remitting MS (RRMS) is the most common form. A portion of those with RRMS will transition to Secondary Progressive MS (SPMS). All of the forms share many of the same characteristics like fatigue, lack of mobility and loss of co-ordination.
I don't think any MSer would say that their MS is a 'better' type to have. I am willing to go on record that, I have PPMS and it makes me feel miserable, every day. Good luck

I was in that 10% at 25 years post-diagnosis with RRMS, and still in at 30 years. Without taking any drugs except a few courses of prednisone during the first 10 years when I had severe attacks. Now, at 32 years, it looks like I may be entering the Secondary Progressive phase after all.

There were no DMD's when I was diagnosed; I was offered Betaseron in 1993 and declined. My hunch is that it wouldn't have changed anything to take it at that point. Actually, I think dealing with the shots and the side effects would have given me a lower quality of life then I had. My remission was so good I was able to live in a lovely "Fool's Paradise" for nearly twenty years, rarely thinking about MS.

So I have no regrets. That being said, I think anyone being diagnosed now should at least give them a try until something better comes along.