Shrunken lesions, no new lesions - fyi fwiw

[OrangeMetal]

I just wanted to share my experience here. I shared a bit in the Tecfidera thread if this info is of use to anyone.

But I wanted to share that I've been on Tecfidera since last July. I was DXed in May with no prior inkling of MS at age 41, with a full numb body relapse. At that time I had 4 lesions in brain, and one in neck that was inflamed that was causing relapse. In August I had one more silent lesion in brain.

My MRI this past month showed all lesions had gotten smaller, and I had no new lesions. I asked why and neuro said maybe "time" is what made lesions shrink and maybe Tec helped with no new lesions. I don't know how common this is so I thought I'd share this.

My neuro did say (I'm not sure why) that he predicts a mild prognosis.

I should add that I am - for the sake of doing something - following a mix of the Ann Borach diet and Terry Wahls but am vegan. I also take Vit D, B12, and the other supplements Borach suggests.

I do not have an lingering symptoms from that relapse and don't get them. The only thing is Lehrmites Sign from that lesion.

I don't know if anyone else has had the situation where lesions have shrunk and not have new lesions like this.

If you don't get any new lesions, or those lesions are not "active" can you still get symptoms?

[pitlover91]

Hi orange metal, I also had lesion shrink and no new show up in my recent MRI but in my case I wasn't taking any meds when I had my last MRI done which was in the beginning of this year which is pretty amazing to me. And I didn't have as many symptoms as I do now that I'm taking all these meds. But what my nuero told me is that if there is enough damage done to that nerve symptoms can linger. Which I guess is my case also.

[KatieAgain]

Orange

Your MRI is great! Awesome.

It is fairly common for lesions to shrink, heal, and go away. And this is what we all hope for.

I recently lost two C-Spine Lesions and 1 T-Spine Lesion. But all my brain lesions were accounted for with no change. I have had lesions disappear or shrink both on and off DMDs.

I have never had a new lesion while on a DMD.

4 lesions is what I would call a "really light load"...depending on where they are located. That coupled with your age and recent MRI is probably why your Neuro is predicting a mild course. Let's hope that holds true.

I too have a "fairly light load" at around 30 brain lesions...but my lesions took up residence in the most expensive and prime real estate of the brain. I have always had expensive taste. However what normally knocks me on my can is C-Spine lesions.

Can you still get symptoms? Yes you can.

Great thing about your case. You got diagnosed really early. And you are doing exactly what you should be doing.

[OrangeMetal]

Hi Katie Again -
Thanks for the response. I'm still a bit new here.

I do not know the terminology or knowledge yet that I've seen referenced here for areas of the brain or spine when people can name exactly where lesions are. I haven't asked that yet or have been told. What are the problematic "quadrants" or "areas" in brain for lesions? And the same for neck/spine?

Also, if you do not have new lesions again and they keep shrinking, then how does the damage continue? Is that a separate issue and never connected to lesions? And do some DMDs - I guess the newest one, Tec - supposedly, for the first time than with other DMDs apparently try to help with this aspect according to the studies?

I'm trying to understand difference between problems from lesions and problems separate from lesions and where they come from. I thought accumulated lesions taking out good nerve space caused lingering problems.

I did ask neuro if it's possible to stay in RRSS stage and not go to next and he said it was possible - that a certain percentage to do not.

Sorry to be long winded. Trying to be brief with the terminology I have.

I appreciate your response and am aware of the difference in my situation with others' severe situations and I do know this is lucky at the moment.

[SNOOPY]

MS causes damage to Myelin, the protective coating surrounding nerves. The damage to Myelin leaves scaring (lesions). By the time a lesion appears there has already been damage done to the Myelin.

Those lesions can heal and disappear, this can happen with or without the DMDs.

If you have an electrical cord and the protective coating on the outside is frayed then you will have a short in the cord. This means the electrical current will not run smoothly and the connection my short out off and on.

MS damaged the Myelin (protective coating) for our nerves.

With an electrical cord you can put electrical tape around the damage and there is no longer a short.

Unfortunately, and at this time, there is nothing that can be put around Myelin to fix the short circuiting that MS has caused. So, we are left with symptoms that come and go and/or residual symptoms with the possibility of more damage done to the CNS.

What are the problematic "quadrants" or "areas" in brain for lesions? And the same for neck/spine?

In general Spinal cord lesions tend to be more symptomatic than brain lesions.

However, any damage to the Myelin can cause short circuiting anywhere along the CNS which includes the brain, spinal cord and optic nerves.

[KatieAgain]

I can try to answer some of your questions...but remember...I am not an MD! You need to write these questions down for your doctor.

I personally have not heard of anyone who has healed all their lesions. But hey...here's to hoping! The goal really is to keep as many as possible from forming.

When we first get an MS Lesion it is active and demylinating. Many times because of this we go into a flare...but not always. Many, but not all MSers get lesions, have flares and then the lesion disappears. This can happen naturally or it can happen with the assistance of DMDs.

The problem is this. Even if a lesion has disappeared and the body has repaired itself and the lesion goes away damage to the nerve could have already taken place...therefore symptoms will periodically pop up, continue or possibly get worse. This is not visible on an MRI.

That is why according to my MS Specialist it is almost impossible to pinpoint most symptoms to a specific lesion. You could have lesions that have formed today and by your next MRI they are gone. They come, they go...but most stick around for the free food.

Generally, but not always, Brain lesions do not cause as many problems as Spinal lesions. C-Spine or neck lesions can in fact be very dangerous. But a perfectly placed brain lesion can cause lots of damage too.

One could drive themselves crazy and waste valuable fun time pinpointing lesions.

Yes...you are very lucky so far...just keep on doing what you are doing. It's working.

[OrangeMetal]

I would like to thank Snoopy and KatieAgain for your kindness and generosity in answering my questions. I will ask these to my neuro who I only see every 6 months. I have tried to ask variants of the questions and sometimes he has not answered very specifically or has said I am overthinking or overworrying.

He has also said I should drink coffee and beer and gluten - that it would only be a coincidence if I got a relapse and ate those things. He has also said maybe there's no way to know unless I reintroduced the foods. I suppose there's not enough studies on it all. I guess I'm trying it just because it's something I can do and is not harming my health. I just saw the movie "Fed Up" which is all about how sugar is inflammatory. That's kinda mainstream with Katie Couric as the narrator. Maybe it's not so far fetched. Not everyone reads NYT but movies seem bigger than that.

I will try to be more concise at my next visit in September.

Again, I appreciate your both's time with this and do realize there is luck at the moment.

[mgoerke]

An MS specialist at Cornell have me a really great analogy to explain why some people continue to decline even on DMDs.

Sometimes a lesion is like a bruise on an apple. At first it's just a small spot but over time the cell death spreads.

Sometimes a lesion is just damage to the myelin, but sometimes there is damage to the actual brain or spinal tissue. So we experience continued death of our axons. It is kind of a chain reaction.

I continue to decline despite not having had a flare since 2011(although I may have one starting now - switched from Ty to Tec).

The flares I had in 2010 and 2011 were pretty intense and I have a very heavy lesion load in my c-spine, so I may have some permanent and expanding nerve damage.

My advice is to ask as many questions as you want and so whatever you feel that you want to do to fight this disease. Don't sit back and just let this happen. It is your body and your life and you should do whatever makes you feel like you are fighting.

It may be a fight some of us can't win but that doesn't mean we should stop fighting. Like Rocky says in his last movie, "it's not how many times you get hit, it's how many times you get back up that matter."