Hi,

The diagnosis of the type of MS you have is generally made over time looking at your MRI scans and clinical presentations on exam. Even then, there are categories like \"possible\" or \"probable\" that can give your doctor \"wiggle room\" when looking at treatments.

Many people start out with relapsing remitting disease, and transition to secondary progressive disease over time. Unfortunately, you can take the CRAB drugs, do everything \"right\" and still experience progression over time.

Hope this sheds some light on the ways the MS diagnosis -- and prognosis -- is refined over time.

All the best,
-Karen

You start with RR and may, or may, advance to secondary progressive. There is an uncertainty with MS.

David

- never lose the ability to laugh

i was dx with ms 7 years ago at 53 yrs old. i woke up with it one day. i had a sandpaper like feeling in my hands,arms, feet and legs.I went to a Nero who dx me with MS. My symptoms never went away....just continued to get worse.Here i am 7 years later in a wheelchair and can hardly use my hands.(I\'m typing with 1 finger).Oh,i also have chronic pain....the kind that never goes away.
I would say this is Primary progressive.I can\'t find much info on this type MS.

That\'s similar to me. I literally woke up one morning and my right foot felt like it was asleep. As days passed the numbness and tingling went all the way up my leg into my back and then the left foot started and it, too, progressed upward to the back. Then my fingers started to tingle. Other symptoms soon followed.

Following steroids and Avonex, I now have only slight numbness in right foot only and barely noticeable tingling in my fingertips. I am hoping that since I am on Avonex, I will stabalize where I am at. I have also lost some vision in my left eye, but new glasses will correct this problem.

I too, have such bad pain. For several years my neurologist did not seem to pay much attention to my pain. It was almost like he did not believe me. After complaining constantly, he began to take it seriously. I wonder exactly where the pain comes from. I am in pain every single day. My neurologist has tried everything. Every few months I go from one pain med to another.

I am taking Lyrica...the only drug that has helped me. I\'m also on narcotic....a fentanal patch and hydro codone for break through pain. Unfortunetly nero pain never goes completely away but now my pain is barable!
You need to Shout louder to your nero.....i know what your going thru!
I took all the anti seizure drugs and anti depression drugs for pain....they hardly helped me......

HI, I HAVE PRIMARY PROGRESSIVE MS. I TOO HAVE TO TYPE WITH ONE FINGER. I AM IN A WHEELCHAIR AND I CAN\'T SPEAK ANYMORE. I ALSO CAN NOT FIND INFORMATION ON THIS TYPE OF MS. I FEEL LIKE I AM ALONE ON THIS. I WONDER IF I WILL EVER BE NORMAL AGAIN.

My neuro always says not to get hung up by the types. If you have an exacerbation and go to the neuro, he/she runs tests, takes MRI\'s, and all the reports come back pointing to MS, then You\'ve Got MS.

So, JMHO, YMMV, of course:

While you\'re going back to your neuro for revisit after revisit after revisit, if you\'re healing, getting better, doing better, lowering in EDSS with each visit, and may even feel almost as good as before the flare, then you\'re RRMS.

If, while going back for revisits, you stay the same, have more little complaints each revisit, or are getting worse and worse, then you\'re PPMS.

Those are usually the initial DX\'s.

As you continue seeing him, year after year, if your next attack hits you kinda sorta like the last one, maybe not the same SX, but the same approach, duration and remission time; then you\'re still RRMS. You relapse, and remit.

If, however, your next attack is worse, longer, bigger, harder, more complex, and when it \'goes away\', you still have some SX that didn\'t quite go away, you complain things are worse than previous attacks... well, then, you\'re Secondary Progressive. SPMS.

If you never quite recover but keep having attacks and losing more functions, going higher in EDSS, then you\'re Chronic Progressive, CPMS.

They pretty much just describe what your neuro is observing in and hearing from you.

Since I didn\'t go to a neuro until after my LAST attack was over (3/02-5/20/02, went to neuro mid June), they didn\'t observe, but I gave them a detailed account of each attack I remembered, 9/81, 91, 92, 93, 9/94, 10/96, 97, 98, 99, 00, 01, 3/02.

Had I gone to them in 1996 I\'d have been RRMS, and then in 98 probably changed to SPMS, and in 02 maybe CPMS.

But since 02 they\'d have to eventually change it back to RRMS since they\'ve never actually seen any of my exacerbations in progress. My neuro finally let me go on LDN in 4/03 and my EDSS is pretty much stable since.



So there\'s most of your various MS labels... and how I see they\'re being used.

Primary Progressive is thought to be a different form of MS altogether. None of the drugs have shown to work in it. There are no relapses in primary progressive, Just a steady decline of disability. RR usually turns to SP, so if you started out with RR then it could be SP. Primary progressive ususally hits older males, but can hit anyone. Hopefully you are seeing an MS specialist and not just a general neurologist, they will be able to help with the diagnosis.

There is lots of information coming out on this and there is lots of research going on. I would contact a good MS center like the one at the UW in Seattle and see if they can help. You are normal, just your physical has changed.

We\'ve had some good reports in the LDN groups from some PPMS and CPMS DX\'d people. LDN doesn\'t care about labels, it only helps orchestrate the immune system and the body does the rest.

Who\'s the labels for? Us or the Docs?

It is so discouranging to hear when a doctor tells you ms doesnt cause pain, then we ask why and they try to blame it on some other desease, i think that ms can cause you pain, come on it effects the neves which in then messes with your muscles, neves have feelings that make the muscles work,does this make any sense, maybe feeling the pain could be a good sign in ms, i dont know for sure, feeling anything with ms is a good sign right??? ask that ?? to your doctor.Hang in there, lorna :) {{hug}}

It\'s absolutely true than MS causes pain, either directly, because a nerve is damaged, or secondarily because of altered gait, stiffness/spasticity in muscles, etc. More and more docs are realizing this and treating their patients appropriately, though you still have to be an advocate for yourself. You know your body best, and will eventually be able to pinpoint what\'s \"normal\" for you.

Having said that, it\'s easy to blame every little twinge or feeling of illness on MS, and that\'s not an answer either. People with MS can (and do) have other conditions that impact their health, some serious. It\'s too bad that having one chronic condition doesn\'t exempt you from the rest! Neuros are important, but all of us should have a primary care doc for our basic health maintainence issues.

-Karen

Hey, #8, still a good description of the xxMS types :)

#8