Brain Atrophy on New MRI

[anon07072023]

Hello. I had my appt with my neuro yesterday.  She noticed a lot of brain atrophy since my brain MRI 7 months ago until now.  The atrophy is all over - around the edges and around in/around the ventricles. And she says it's a lot of atrophy compared to someone my age (39 yrs old).  

Yet, there are very few T2 brain lesions - maybe about 6 total. They had noted before that I also had 3 - T1 black holes.  Plus, I have spinal lesions.  I've only had MS symptoms for about 2 1/2 yrs - and a Dx of RRMS for about a year.

Is this typical for only a short period of time?

I've told my neuros that even though I have a Dx of RRMS, my symptoms have never gone away. They just started one day and are just slowly becoming worse - not drastically worse, but worse none-the-less.

My daily / constant symptoms from the start and that are slowly become worse are:

Legs feel stiff, heavy, & weak (before I really only noticed it on my left leg, now also my right
(a lot of the time it almost feels like I’m trying to walk fast in water)

Slower going up stairs & walking fast – especially uphill, & legs get tired faster

Legs feel shaky after walking for a while (~20 min)

Tightness & pain in hamstrings (more so on left leg) and around left knee & hip. Back of left calf feels weird – I’m not sure if it’s part of the spasticity or if it’s cramping

Quick spasms or tremors on bottom part of front left thigh and the back of my thighs

Cramps & spasms in both feet and vibrations on bottom of feet

Hyper-sensitivity inside lower left leg

Numb & tingling feet and sometimes goes up part of left leg & I have it in my pelvic area

Bowel / Urinary - Constipation / hesitancy, urgency, frequency, fullness, & spasms in my bladder

Fingers often feel uncoordinated

Sometimes my vision is blurrier than other times

Fatigue

Cognitive issues

Etc....

I know there is no MS that is alike, but is all of this typical for someone with MS that's RRMS - and only after a couple of years? I've had these symptoms now for the last 2 yrs or so that are just getting worse. It just doesn't seem normal.
My new neuro says that looking at my T2 lesion load, she doesn't know if she would have intially Dx'd with MS, but with all the atrophy and my symptoms, she says it's definitely MS.

Thanks - and sorry this is so long,
Kelly
  

[Lulu54]

be sure to make copies of those records before you drop them off.... things like this are too important and much too easily misplaced in busy offices.

good luck, L

[anon07072023]

I had read that before (about atrophy occuring early) for both RRMS & PPMS.  And like you had said, I have also read that atrophy is an indicator of disability and progression. Thanks for the link.

When I went in to see this new neuro for the 1st time about a month or so ago, she had decided to put me on a 5-day round of IVSM.  I was wondering why, since I wasn't in a "flare," these are the same symptoms I've been living with for the last 2yrs, but none of my neuros seem to listen to me when I tell them this. I also had the IVSM 2 yrs ago and it didn't really work then either.  She did mention to me that there are grey matter lesions and these can't be seen on a normal MRI and these are the ones that cause a lot of disability.  I still need to look online to read about them.

Jen, actually, I do have a definitive Dx for now at least - RRMS. I was diagnosed a year ago. I've been on Copaxone since late Sept of last year.  

My neuro wanted me to bring in some other previous MRI scans for her to look over. When I drop them off, I'm going to leave her a piece of paper, again, with my list of symptoms - I tried to give it to her during my appt, but she just glanced at it for 5 seconds and handed it back to me without reading it.    

Take care everyone,
Kelly  

[jensequitur]

See, as I've said before, the first three years after diagnosis can be very difficult.

I was experiencing weird symptoms a year and half before diagnosis.  I had constant vertigo, cognitive issues, hand and leg weakness, eye problems... each day something was different, and it was all awful.  I think I had about three or four flares a year.  I was sure that I had PPMS, or something similar.  I just seemed to get steadily worse.

It took me three years after diagnosis - from 2007 until 2010 - before I began experiencing some improvement.  I have new problems, and sometimes the old ones return, but I feel better than I did back then.

Getting a diagnosis will help you feel better.  At least then you'll have a name for what's going on.  Talk to your neuro about symptom management.  Getting on a DMD will reduce your chance of having a flare, which will give your body a chance to heal from the inflammation.

[Lulu54]

I went looking for more info and found this interesting summary that says brain atrophy occurs earliers than thought and is found in RRMS.  You can read the notes at

http://neurology.jwatch.org/cgi/content/full/2002/510/1

[anon07072023]

I read that there was a Canadian study done on people with PPMS, and 25% needed assistance walking after 7.5yrs.  That's a lot different than not being able to walk after 2 1/2yrs.
http://www.mstrust.org.uk/information/publications/ppms/progression.jsp

I think the atrophy, along with the brain lesions, blackholes, spinal lesions, vision problems, and them ruling everything else out pushes her towards an MS Dx. My symptoms are very neurological in nature, too.  She's not the one who Dx'd me in the 1st place, it was the neuro before her and she's keeping the same Dx as him. I just wish they would take the time to listen to my point of view.

I'm sure she's not going to say PPMS.  Like I had mentioned before, she had said that with my low count of brain lesions, she would be teeter-tottering on an MS Dx, but everything else pushes her that way.  

Thanks again,
Kelly

[Lulu54]

Kelly,
All those questions, doubts and symptoms would really make me pause, just like you have.  As I was reading your words here I was remembering something my MSologist said at a public talk when a person with PPMS asked about treatment.  He said without a doubt he would continue to offer a DMD because it at least was a fighting chance to help.   His point was, regardless of which form of MS, we can't give up on the treatments maybe helping.

Atrophy of the brain is supposed to be an indicator of disability - you definitely need to talk this over with your doctor.  I'm sorry I can't engage in a better conversation about that point.

hugs, Lu

[HVAC]

Kelly,
  Thinking you have PPMS and being told it are two different things. This is why this has to be a conversation with your Doctor and you need to look at all options. There are treatments since I was Diagnosed with PPMS in 2010 and there are more coming out. Biogen has some promising treatments.

I know lots of people with PPMS and we are all different. I was with two women with MS today and we are all different. I have no idea how my MS will go. I really only know where I am today. My Doctor can't tell me.

You hang in there. You have been through a lot.

Alex

[Sidesteps]

I just wanted you to know I'm thinking of you. I'm really sorry you are stressed and going through this.

My guess regarding making the appointment for 2 months is that allows you enough time to process and develop your questions as well as monitor your progress.


How does atrophy determine her dx's process with MS?

[essdipity]

Well Alex has had PPMS for many years, and she's not in a wheelchair. Maybe you should post a new question, just for your own information and satisfaction, to ask those with PPMS about this.

I'm sure that 2 year thing isn't true. PPMS doesn't necessarily move faster.

ess

[anon07072023]

Thanks Alex & Ess.  I really appreciate your time that you took to respond.  I've thought all along that it's PPMS.  It wouldn't really bother me if that's what they said that it was.  I've always been a realist.  I'd rather know the facts.  

I've talked to both of my neuros that I've gone to in the last year or so about my concerns of PPMS.  They both pretty much just laughed and said that if I had PPMS I wouldn't be able to walk if I've had it for 2 yrs.  I'm not sure why they both think this. From what I've read, that's not true.  I really want to print out some scholarly articles I've read, but I don't want to offend them.

Ess, how you described the atrophy is basically what she said - "the brain has shrunk further from the skull so that the gap is wider, the ventricles may be bigger, and the folds in the brain are wider spaced."  

I'm supposed to go back and see her again in 2 months.  I'm not sure what for though.

Thanks again,
Kelly

[essdipity]

Hi, Kelly. You do have a great many symptoms. Are you asking whether you could have PPMS? It sounds as though you could, but we're really not the ones to say. You really need to have a frank talk with your neuro.

Would being told it's PPMS make you feel better or worse? I think that in your shoes it might make me feel better, because it would explain why I haven't had relapses. Either way, though, it is what it is, and just dealing with it is effort enough.

Regarding atrophy--when my neuro looked at my first MRI and another done 9 years later, he immediately saw atrophy significant enough to remark on. Of course I'm old enough for this not to be unusual, but then he knew how old I was, so I'm assuming he was allowing for that. I later asked my NP and she said the atrophy was overall and not localized. From what I've read, this means the brain has shrunk further from the skull so that the gap is wider, the ventricles may be bigger, and the folds in the brain are wider spaced. You might ask if this is the case with you.

On a practical level, I haven't noticed much in the way of cognitive decline. I do find myself reaching for nouns, especially names, but then again when you get to my age you become acutely conscious of any brain lapses. I'm always happy when I finally retrieve what I'm grasping for, though it can be hours later.

You mention cognitive issues, but don't elaborate, and you put this last in your list. Maybe that means it's the least troublesome? I hope so. If you are having specific trouble, can you find out if atrophy is in that area of the brain, I mean assuming it's not diffuse?

Really, please have a heart to heart with your neuro. That's the best way to understand what's going on. And naturally, feel free to share, vent or whatever with us any time.

Sending best wishes,
ess

[HVAC]

Kelly,
  I hear you are scared and confused. The word atrophy would scare anyone.

These answers have to come from your Neurologist. First because this is complicated and someone like me could tell you the wrong thing and upset you more. The internet is passive.

Second with any answered question there are more questions to be answered by a professional. The most important to ask and I forget is what are my options. I go home from the Doctor when he tells me something wondering why I did not ask that. Sometimes it is just plain shock.

Third sometimes these things are very complicated to diagnose. Yes even with different kinds of MS things go differently. I have had PPMS for 46 years and although it is finally picking up speed I have managed it on my own for most of my life.

What I needed was a good support system. I had a friend with MS, the forum, a great Doctor who has me just call once a week to see how I am doing, a therapist, my family, friends, and the MS Society. I was so scared, almost scared to death. I thought I am not brave enough to face this.

I can't answer your question but I am here for you.

Alex