Multiple Sclerosis (MS) Support Group

Wow that is a lot of territory wrapped into one post. I have many articles book marked to help me answer those questions for myself....I have drawn conclusions based on a piece if information in one article, then the next...so I'm not gonna pass on my book marked sights, (although if you send a message for some I will pass them along)

Instead I will tell you what conclusions I have drawn.
One of the most interesting & helpful things to me has been a chart that I posted in the pictures section of my profile. It's the second one, a bar chart that show lesion activity and stages of MS.

I printed that graph out and left it on my kitchen table for a month and look at it intently for a while then again in a week. I swear there is so much in that graph it is not fully understandable the first time a person looks at it. More things are in the graph the second time and the third. It's almost like a person cannot absorb it all in a single viewing.

I wish the stages: RR, SP w/Relapses & SP w/o relapses would go away. The progression of MS is Inflammatory, Inflammatory & neuro degenerative then neurodegenerative alone. That is how it is treated.
It starts in the inflammatory stage, the inflammation decreases and neuro degeneration increases until it is neuro degeneration alone.

The inflamation stage produces lesions, the neurodegenerative phase does not. The inflamation stage can be measured on an MRI through lesions which are visible to an MRI. The neuro degenerative stage cannot be measred by an MRI, when damage is done to the nerves directly. Damage done through neurodegeneration is observed by clinical observation, the effects of the neurodegeneration have to be observed to know that neurodegeneration is occuring.

MS damage occurs in two different ways for each stage. In the inflammatory stage, permanent damage occurs through incomplete recoveries after a relapse. Did you issues happen that way, after a relapse?

All relapses are associated with a lesion. Not all lesions cause a relapse. The lesion might not be measured on an MRI during the relapse, for multiple reasons, the MRI might not measure the lesion. But if a relapse is happening a lesion is there somewhere.

After a relapse, some effects are recovered. Early in the inflammatory stage most is recovered. Later in the inflammatory stage, less is recovered until nothing at all is recovered.

The stuff that is not recovered is how MS does it's damage in the inflammatory stage. MS Meds like Rebif don't cure MS as you already know, they don't even delay the neurodegenerative stage.

They just attempt to reduce lesions and relapses so a person has had less permanent damage from lesions & incomplete recoveries before they get to the neurodegenerative stage. Where treatment does not exist. Keep a person in the best shape possible while it can be treated. Because the future is not treatable. I read somewhere that the goal of RR treatment is just to keep a person in as good of shape as possible for the SP(neurodegenerative stage).

In the neurodegenerative stage, damage is done directly to the nerves and is not measured by an MRI. The nerves are an organ with a funny trait. When they are damaged they begin to self destruct, damaging themselves. That is the neurodegenerative damage that starts happening & why the meds that slowed lesion activity doesn't slow the nerodegenerative stage.

This destructive impulse of the nerves is called the Wallarian forces. In the news you have seen evidence of the Wallarian forces when a football players get a spinal cord injury or swimming divers get a spinal cord injury. If they can cool the body down rapidly enough they may retain some ability to walk. It is the Wallarian affect they are slowing down by cooling the body temperature.

I believe this Wallarian affect starts to happen in the neurodegenerative phase of MS. That's why it is not measurable by an MRI & the currently available ms meds that work for RRMS or SP with relapses still present, don't work in the neurodegenerative phase - SP with relapses no longer present.

That summarizes what I understand about lesion development & MS

I'm big on the Tysabri issue myself, now. I did 10 infusion of TY, I will go for the 11th infusion at the end of the month. My next doc appointment is between the 11th & 12th infusion. I will ask her at the appointment if I can stop TY or if she can point out any improvement, that I should continue it?. I'm not really big on the infusions, I don't like them. I didn't have a problem with the infusion, but I don't like the nurses & I'm not seeing benefits to TY. Well not enough benefits to make me put up with the nurses at the infusion center for 2 hours every 28 days.

That's the second part of your post.I wanted to address. I was where you are at. I wasn't having a lot of lesions or relapses. TY treats the inflammatory stage, not the neurodegenerative stage. Many people have gotten large benefits from TY.

I thought to myself I am at end of the RR(inflamatory) stage. So I have a closing window of time where I can use TY. So I did use it for a year. I'm not certain I will go any farther than that year. It seems to me the people who got great benefit from TY had many lesions forming,many relapses or spinal cord involvement. Your drop foot has a strong possibility of being from spinal cord involvement? You may be one of the people who get great benefit from TY. If your doc is recommending it too, you may as well try it to see if it does help you. That's what I did.

Any other info I can provide, or clarification of what I said,let me know. Thanks. Good Luck with your decision.

Thank you so much. No really, really, thank you so much.

If you need more info, other than what I sent to your personal box, then just let me know.

Best Wishes,
EP

Thank you both so much. I know we tend to joke around, have a little humor, try to help each other make it through things, and answer what we can to help others.

I just want to say that the time and effort you both put into finding this info, and then that you share it, is very much appreciated.

I think within all of it is what I need to both really feel comfortable about what I have come to believe is the nature of the "progression" of MS, the real value Rebif has had, and the reasons that I have very serious doubts about Tysabri at this time.

Thanks again, and a great, safe holiday weekend to all!

nny11, Thank you SO MUCH!! I learned more in your post than allthe other reading I have done. I didn't know about how the progression worked. Thanks again for summarizing this information!!

BTW I don't know when they will start using them or if they won't due to costs but there are 2 other tests that measure the myelin. If you want to look into it they are called an macromolecular content (MMC) and a magnetization transfer ration (MTR). The MMC results were slightly more accurate than the magnetization transfer ration (MTR). However, there was a strong correlation between the results of both even after edema effects. Both tests showed the recovery of acute lesions which shows remyelination.

Best Wishes,
EP