Atrophy and an uncertain future

[Mable]

I am having a hard time emotionally right now and am hoping to hear from some long-time MSers. Here’s what’s up...

I’m 57, diagnosed 7 years ago. With the help of my very positive medical professionals, I was able to convince myself nothing bad was happening to me. Though I always had gnawing doubts about brain atrophy. My ventricles seemed largish on my MRIs.

My neuro dismissed my concerns. You can’t tell I have MS. No relapses on Copaxone. Everything is great.

Fast forward to today. New doctor and new MRI machine that actually measures atrophy by comparing my brain volume to a database of healthy people my age.

My results are not good at all! My brain is showing a ton of atrophy! In fact it’s shrunk down to be among the smallest 10% of the normal brains—for my age—with even worse results when you just look at gray matter.

I’m switching to Ocrevus next month, which should slow down the atrophy, but with aging and what I’ve lost already, I don’t think I’m going to avoid progressive disease.

So I’m just sitting with that. How do you get on with life knowing you’re facing a disabling old age? That you’re probably not going to work as long as you hoped? (Love my job. Also scared of being too poor to take care of myself.) That you can’t trust your memory? That you can’t do anything more to preserve your abilities or independence? That you are going to be a burden on your family, for years perhaps? Or worse, you might outlive them?

Okay, you can see I’m not holding it together at all. Any wisdom to offer?

[Myoak]

Dear Mable,

First, please realize that you are functioning at a very, very high level and there is no reason you cannot continue doing so. Brain atrophy rates on the most effective MS DMTs, Ocrevus, Tysabri, Lemtrada, and HSCT closely track normal aging.

Your post helps explain why many neurologists favor educating patients about brain atrophy and the potential newer DMTs demonstrate for effectiveness regarding it. Also, it should be understood that this consideration, brain atrophy, is only recently gaining attention as a target in therapy.

You have stated the case for why atrophy is important more eloquently than any neurologist ever could. It really ticks me off that doctors continue screwing around prescribing poorly effective MS DMTs that have minimal effect on atrophy without bothering to educate their patients about it so patients can make a more informed treatment choice. Your post will help educate people more than the next 100 neurologist will take the time to do, IMO.

Some neurologists favor treating as early as possible and as aggressively as possible and I believe the results speak for themselves. Especially notable, here on this board, are the people having done so using Tysabri. Ocrevus hasn't been around long enough to have such a lengthy track record; same with Lemtrada and HSCT. However, longer term results in trial with HSCT have been spectacular, IMO, and I regard it as the very best option, if available. IMO, HSCT is beyond question the best DMT and Tysabri next because of its stellar track record, as several here can attest. Trials show Ocrevus and Lemtrada closely normalize brain atrophy, also.

Now listen up, girl! You have every reason to be optimistic about the future because you are functioning at a very, very high level. On a more effective DMT, one that normalizes atrophy, you have every expectation of continuing to do so.

How many times have our fears loomed fearfully large in future anticipation but when the future arrived those huge fears were never realized?

Your judgement is certainly better than your previous doctors and they don't have MS. Your thinking, your functioning, your abilities are intact. You can rejoice in how well you are and you can expect a wonderful future full of life!

Be strong!

[MMMMS]

Are you sure that is has shrunk to the smallest 10% of normal brains? Do you have earlier tests to show that it has actually shrunk? I'm asking, because I'm thinking that if your brain is within normal ranges, it's possible that there is not as much atrophy as it sounds like. You may have been very close to the 10% range to start with.

I have that question with brain function tests, too. They test after someone has a problem and then measure from "normal". But without a test from before suspected changes, there is no real way to tell what, if anything, was lost.

I am having a hard time emotionally right now and am hoping to hear from some long-time MSers. Here’s what’s up...

I’m 57, diagnosed 7 years ago. With the help of my very positive medical professionals, I was able to convince myself nothing bad was happening to me. Though I always had gnawing doubts about brain atrophy. My ventricles seemed largish on my MRIs.

My neuro dismissed my concerns. You can’t tell I have MS. No relapses on Copaxone. Everything is great.

Fast forward to today. New doctor and new MRI machine that actually measures atrophy by comparing my brain volume to a database of healthy people my age.

My results are not good at all! My brain is showing a ton of atrophy! In fact it’s shrunk down to be among the smallest 10% of the normal brains—for my age—with even worse results when you just look at gray matter.

I’m switching to Ocrevus next month, which should slow down the atrophy, but with aging and what I’ve lost already, I don’t think I’m going to avoid progressive disease.

So I’m just sitting with that. How do you get on with life knowing you’re facing a disabling old age? That you’re probably not going to work as long as you hoped? (Love my job. Also scared of being too poor to take care of myself.) That you can’t trust your memory? That you can’t do anything more to preserve your abilities or independence? That you are going to be a burden on your family, for years perhaps? Or worse, you might outlive them?

Okay, you can see I’m not holding it together at all. Any wisdom to offer?

[pennstater]

I am so sorry you are going thru this. I can imagine how frightening it all is. I had cognitive changes with my first relapse, so always my biggest fear.

Since you want to stop atrophy, Ocrevus appears to be a good choice. While my MRIs lesion wise stayed the same, my cognitive issues worsened while on Avonex and Rebif. So I can only assume it may have been atrophy, then again, could have been meds. I am in 8th year on Tysabri and feel I stabilized on it.

Other than that, I have been focusing on doing things that are good for the brain: exercise, healthy foods, meditate, and learning. My neuro is always pushing to learn an instrument and new language, along with cardio exercise.

Working has also been shown to have a positive effect on brain health, both for the job iself, and socialization.

I discussed with my neuro whether I would want the MRI you had. He asked how would the results change how I live my life? Since I could only envision for the worse, I opted not to yet. But I am now thinking I want to know.

As for your future, I am a big believer that none of us really know our future. We can only control what we can. I try to subscribe to plan for the worst, expect the best. Depending on your personality, maybe having a plan in place should the atrophy continue would bring some peace. Things such as medical and financial power of attorney, living options, etc...

I also think that the study of the brain and how it works is still in it's infancy. The study of neuroplasticity is amazing. Have you discussed with your neuro? Maybe activities he can recommend to help give you the best chance.

Try to remind yourself that you are no different today than you were before you had this test. That you are doing all you can to support your future and whatever it brings, it brings. But for today, you are going to live for now and live life to its fullest.

Don't let the fear of the future take away life today. Much easier said than done.

[Jules A]

I wish I had some answers for you.

I'm just a few years younger than you are and one thing that has helped me is that I have adjusted my life span expectations. I question those who tout anything other than acceptance that despite medication hopefully staving off progression: MS is a chronic, progressive disease.

My plan is to hopefully continue working until my early 60s due mostly to health insurance and then retire with again hopefully the ability to enjoy a few more years of decent physical and mental abilities. If not I will adapt as best as I can. One of the pluses of aging is that many of the things MS brings our way are also artifacts of the natural aging process, although often significantly earlier, so eventually if anyone lives long enough they will face much of what we are facing with regard to physical and mental decline.

What I have found that I can control and gives me some comfort is having been blessed to get my savings/investments in order and for the past few years allowing myself to enjoy the fruits of my labor by traveling. I'm trying to make hay while the sun shines. Best wishes to you. J

[msgijo]

Are you sure that is has shrunk to the smallest 10% of normal brains? Do you have earlier tests to show that it has actually shrunk? I'm asking, because I'm thinking that if your brain is within normal ranges, it's possible that there is not as much atrophy as it sounds like. You may have been very close to the 10% range to start with.

I have that question with brain function tests, too. They test after someone has a problem and then measure from "normal". But without a test from before suspected changes, there is no real way to tell what, if anything, was lost.

Yes - this.

After beng dx'ed for 20 years it was decided that I needed a cog function test. Now I KNOW that I cannot think as well as used to, but the tests came back as being in the "normal" range for my age. I was so frustrated that once again my concerns were not going to be treated as important that I smarted off "WOW - I must have been a real genius in my day, huh?". The doctor took it well - She smiled and said, "yes you most likely were".

Not very helpful, but it did diffuse some of my anger about what MS has taken from me. They offered some 'tricks' to help me, but most I was already doing (making lists and using them, getting into routines and using GPS if I were having problems when driving).
The testing was done about 5 years ago and I am 'thinking better' now than I was then. I feel that using my mind helps keep it in shape. I read a lot and play games (crossword puzzles, sudoku, spades, etc.).

A silver lining is that we are both at the age where we can blame everything on age .

Best of luck with Ocrevus.

[oceanpride]

Hi Mabel. I’m close to 60 and PPMS since 05 with symptoms 10 years before. Only had one MRI when I got diagnosed then I didn’t want anymore. They wanted me to have one before I started Ocrevus for a baseline to compare to. They made an appointment to go over it with me but when they showed it on the screen I couldn’t look at it. When they started talking about it I blanked out.
I notice myself searching for words in conversation. I notice poorer memory. I try not to think too much about the future
Mostly just deal with today now. Today was not a bad day. hopefully tomorrow won’t be any worse. Thinking about the future is just upsetting so I just don’t too much. Still stay very busy at work and it helps keep my mind off it. Sorry I’m probably not much help just wanted you to know your not alone.

[Mable]

Now listen up, girl! You have every reason to be optimistic about the future because you are functioning at a very, very high level. On a more effective DMT, one that normalizes atrophy, you have every expectation of continuing to do so.

Thanks MyOak. You sound like my neurologist. He isn’t convinced I’m nursing home bound either. I reread your post a few times when freaking out over the past couple days—it helps. You’re right. I am high functioning.

But I gotta ask why you think my future is bright? I know you read Giavononni. You must be aware of his recent posts about atrophy and his disappointment in B cell therapies.

Don’t you think I’m running on the fumes of cognitive reserve past?

[Mable]

Without a test from before suspected changes, there is no real way to tell what, if anything, was lost.

All true. There is a remote chance I started small brained. I’m sure they’ll measure the difference in my next MRI. We’ll see

[Mable]

Working has also been shown to have a positive effect on brain health, both for the job iself, and socialization.

I discussed with my neuro whether I would want the MRI you had. He asked how would the results change how I live my life?
Try to remind yourself that you are no different today than you were before you had this test. That you are doing all you can to support your future and whatever it brings, it brings.

Best insight ever, Kathy. I’m trying to make it through the day, traumatized, like I need to be saying good bye to my old life—and you’re absolutely right. The only thing that’s changed is the information I have. I’m the same.

As an aside, knowing about my atrophy has made me fearless about getting onto more aggressive treatment. So it helps.

In your case, you’re already doing well on one of the best drugs for atrophy. Wish it had been available to me when I was diagnosed 7 years ago

[Mable]

I question those who tout anything other than acceptance that despite medication hopefully staving off progression: MS is a chronic, progressive disease.
J

Jules, I remember you, or someone like you, saying this years ago. It raddled me. “But not me! I have Copaxone. I’m going to be fine.” And I had an army of medical professionals that allowed me to believe that, too. They thought my worries were unfounded. This was all just me being anxious.

Today, I think you’re absolutely correct and I wonder why our doctors don’t make that clearer.

Then again, maybe many 35-year-olds on Tysabri/Lemtrada today will be mostly fine. Plus they have time if a more effective treatment emerges. But I feel like it’s pretty late for me.

[Mable]

Yes - this.

A silver lining is that we are both at the age where we can blame everything on age .

Best of luck with Ocrevus.

Good point. At 57, most of my friends have plenty of problems of their own!!

Thanks for telling me about how you’re doing. It’s a reminder that many deficits aren’t insurmountable

[Mable]

Hi Mabel. I’m close to 60 Sorry I’m probably not much help just wanted you to know your not alone.

More helpful than you know, Ocean. I went out last night with friends who drink too much (me=water) and laughed and danced like a woman with nothing to lose. Of course live for today. Thank you.

[Jules A]

More helpful than you know, Ocean. I went out last night with friends who drink too much (me=water) and laughed and danced like a woman with nothing to lose. Of course live for today. Thank you.

This made my day!

[Temagami]

Mable,
I´m almost your age with 8 years into this journey and I too worry about the cog aspect. Am 4 doses into Ocrevus after failing Copaxone and Gilenya. Left work at the end of 2016 and started Ocrevus in April of ´17. No new lesions or relapses since O. I now wish I´d left work sooner as the stress was a significant factor and I had already started with a generous number of lesions.
So, I read George Jelinek´s website and read Terry Whals. Looked at the Swank data.
For me, I´ve gone gluten-free and dairy-free, do yoga 3x per week with meditation and chanting, sing, write songs, have a lovely pooch, and now have a roommate which adds to the social piece.

Aerobic exercise helps fight atrophy.
There´s a new free app called Decoder from Peak Brain that was proven to help with executive function. (I have a flip phone so have not tested it.)
If the crappy news about the atrophy has a silver lining, perhaps it is that you will do the life style changes that you know affect change but you hadn´t yet gotten around to doing them.
If you smoke or drink excessively- that´s a no-brainer place to start.
If you eat trans fats or excess saturated fats, that´s another easy place to start.
There are lots of non-drug clinical trials for cognition and MS- go to clinicaltrials.gov to look. Then you´d have regular monitoring.

With my cog changes, I am gentle with myself. I describe it as a narrowing of my mental bandwidth. It´s still frustrating and worries me, but I am working on coping/adaptability strategies. Hey, at least I´m not so far gone that I don´t know that I have an issue.

Meditation lengthens telomeres- which are correlated with longevity.

On the same journey,
Temagami