Help~anyone have Brain Atrophy seen on MRI?

[mjan]

Ok, I have a new MS neuro=marvelous, kind, listens and wants to figure out my whole, complex medical history.

You see I went from possible MS in 2004, (benign) to no, you do not have MS. I had over 20 lesions, but not MS kind and place.

Then a whole new set of docs put MS back on table. Six years later with 2nd opinion, MRI shows me the typical MS lesions. ok.. but then that MS neuro left.

Ironically she is a new partner to the first MS neuro who ruled MS out..She is really trying to figure me out LOL!! She ran her own clinic, but moved here to be with my former MS neuro, who is well respected and renown in this field. I feel lucky to have found her.

NOW for the first time in 8.5 years she is concerned about my signs of brain atrophy that has been there for years. The ONLY person who ever brought this up in 2004 was the PA for the MS neuro. Nothing else was said by anyone who has ever treated me. So I never considered it further.

So now she is considering doing this $7000 genetic test to determine IF I may have one of seveal types of "Spinocerebellar Ataxia".. I have a few symptoms but not bad enough. I would have to pay 20% of that test IF they even approve it. I really do not want to take that test anyway and I cannot afford to.

But she wants to make sure no stone is left unturned since my history is so bizarre. I lost my career due to cognitive issues and "black outs"lasting a several seconds on my job. I was making errors or "blanking out" unknowningly treating patients. It is very serious. Seizures have been ruled out trust me. But I do have abnormal EEGs.

I appreciate her approach. She has not yet decided to do the test. No matter what, there is no treatment for these types of ataxias, either. She is possibly linking the cognitive issues to this atrophy.. huh? And I know you can have atrophy with NO signs too.

Now she is not not sure I have MS. She was all over the place confusing my poorly functioning mind already LOL. Then she adds maybe a benign case.. what? Then thinks the MS hug which is back needs a thoracic MRI.

Here's the clinker: seems when I finally produced NEW MS lesions, in 2010, now the right shape and place for MS, they were NOT enhanced and that concerns her.

Any feedback would be appreciated..

Jan

[MarkLavelle]

Who would have thought a doc could be too thorough?

I'll have to re-check the MRI reports when I get home, but I know they have noted either 'shrinkage' or 'atrophy' for years. My neuro has called it normal, and implied it could be linked to having a brain tumor removed in '98.

Here's the clinker: seems when I finally produced NEW MS lesions, in 2010, now the right shape and place for MS, they were NOT enhanced and that concerns her.

Why is she concerned about new lesions that aren't enhanced? It just means that they weren't actively inflamed at the time of the MRI, and if you didn't have any sx when they were active there's no reason to expect to catch it on MRI.

[mjan]

Who would have thought a doc could be too thorough?

I'll have to re-check the MRI reports when I get home, but I know they have noted either 'shrinkage' or 'atrophy' for years. My neuro has called it normal, and implied it could be linked to having a brain tumor removed in '98.

Why is she concerned about new lesions that aren't enhanced? It just means that they weren't actively inflamed at the time of the MRI, and if you didn't have any sx when they were active there's no reason to expect to catch it on MRI.

Thanks again for your response, Mark.
When I got the new MS lesions, this was just after 5- 6 weeks prior MRI that did not show them. So she expected them to be enhanced as I was in hosp IV steroids with an exacerbation at the time.

Atrophy is not uncommon if you are alcoholic (NOT) or elderly. But they first noticed this at age 54.
I was never concerned as no other neuro mentioned it. But because she doesn't want to "MISS" any OTHER diagnosis, I think she is being thorough as I said.

Jan

[macarolina]

I have brain atrophy noted on my MRI, first noted in late 30s/early 40s, so not age related, and I have 1 or less drinks a week, so not alcohol either. My neuro says the atrophy is likely contributing to my cognitive issues. He didn't seem to find it uncommon to MS.

[MSer102]

My neuro says the atrophy is likely contributing to my cognitive issues. He didn't seem to find it uncommon to MS.

From what I've read brain atrophy isn't uncommon in MS. I think that some neurologists don't even mention it to patients because there isn't anything that can be done about it once it happens.

[Thinkimjob]

I think you're right, MSer102. Makes you wonder what else they don't mention because there's nothing they can do.

[MSW1963]

During MS dx, my MRI report at the time indicated 'brain atrophy significiently beyond the age' of the patient.

I was seeing an epilepsy specialist neuro when the atrophy was detected, but the epilepsy neuro thought it wasn't worth mentioning, 'encouraged' me to ingnore the reference to atrophy mentioned in the report.

Since I've started keeping record of my MRIs and writen MRI reports, I don't recall seeing atrophy mentioned since then.

BTW, I was dx with seizures many years before MS, that are now considered presentation of my early MS.

Not trying to second guess your neuro's, but I honestly don't understand the years of hesitation to dx MS when there are many sx's that while yes, they could be sx's of many other disorders, but if/when everything else has been ruled out and you are left with 20 brain lesions, MRI changes over time and sx's that have been ruled out for another explanation, I don't get the reluctence to dx as there was decades ago, before treatments were available, etc.

Best of luck to you and I hope you get answers soon.

[mjan]

From what I've read brain atrophy isn't uncommon in MS. I think that some neurologists don't even mention it to patients because there isn't anything that can be done about it once it happens.

Well, because I have cognitive issues, she is looking into this. Not sure where this will go anyway. AND it is not treatable if it is one of the Spiro-cerebellar ataxias.. there are 6 at least!

Cog issues cost me my career. And I have several other medical conditions, two rather rare ones. But the atrophy so young concerns her..

Jan

[mjan]

During MS dx, my MRI report at the time indicated 'brain atrophy significiently beyond the age' of the patient.

I was seeing an epilepsy specialist neuro when the atrophy was detected, but the epilepsy neuro thought it wasn't worth mentioning, 'encouraged' me to ingnore the reference to atrophy mentioned in the report.

Since I've started keeping record of my MRIs and writen MRI reports, I don't recall seeing atrophy mentioned since then.

BTW, I was dx with seizures many years before MS, that are now considered presentation of my early MS.

Not trying to second guess your neuro's, but I honestly don't understand the years of hesitation to dx MS when there are many sx's that while yes, they could be sx's of many other disorders, but if/when everything else has been ruled out and you are left with 20 brain lesions, MRI changes over time and sx's that have been ruled out for another explanation, I don't get the reluctence to dx as there was decades ago, before treatments were available, etc.

Best of luck to you and I hope you get answers soon.

Thank you for that info and comments. It is okay that they do not rush into a MS DX, as my other disorders may have been missed all together. One is a rare kidney disorder.

Interesting comments on your seizures. What type of seizures do you have may I ask? I had the 5 day video EEG work up. It shows abnormal MRI, abnormal EEG but no indication of temp lobe seizures as they once suspected. I "lose" seconds of time, yet to others I look like I am awake and fine. So it is NOT absence seizures. Did show some signs of "simple partials" and because I have NO memory of lost seconds, they thought complex partials.

Another mystery.. maybe they just don't know how atrophy affects the brain unless it is dementia related, but thanks for your feedback.

Jan

[Tawanda]

I have. I have to chime in here with all the folks who said this seems so common that the neuro. barely discusses it. Maybe many "regular" people our age have similar levels of brain atrophy going on, but if there are no symptoms, why would they get their brains scanned to find that out?

I feel about as stupid as I ever did before M.S., so I am not too worried. I worry more about lesion/plaque junk.

Your life sounds like mine when I was first diagnosed. I was pushed around to so many doctors, specialists and testing places that it felt like that's what my whole life consisted of. Now I just want to go places and do things that improve my SPIRIT.

Good luck, Jan

[mjan]

I have. I have to chime in here with all the folks who said this seems so common that the neuro. barely discusses it. Maybe many "regular" people our age have similar levels of brain atrophy going on, but if there are no symptoms, why would they get their brains scanned to find that out?

I feel about as stupid as I ever did before M.S., so I am not too worried. I worry more about lesion/plaque junk.

Your life sounds like mine when I was first diagnosed. I was pushed around to so many doctors, specialists and testing places that it felt like that's what my whole life consisted of. Now I just want to go places and do things that improve my SPIRIT.

Good luck, Jan

Thanks Tawanda, always appreciate your words AND spirit!

I chalk this up to a NEW MS neuro who is willing to go above and beyond to see if anything was/is missed. I appreciate that and am not worried.

But I do agree we need to know what is going on with our brains/bodies even if there is no treatment.

Yes, my spirit frees me up~ (well after I pay my copays LOL)

Jan

[MarkLavelle]

.. maybe they just don't know how atrophy affects the brain unless it is dementia related

I think you've hit the nail on the head there.

It'll be interesting to hear if you can learn any more from the new neuro on the subject...

[CaroleL]

(((HUGS))) Mjan!

I'm glad you have a doctor who is going the extra mile for you.

I'm curious to know if the MS Society would cover the 20% not covered by insurance? Might be worth looking into. If not, maybe some other agency could help.

I really hope you're not burdened with this extra cost. Lord knows you've had enough to deal with already.

Best of luck to you!

[BigA]

Atrophy is normal. The amount can be accelerated with diseases such as MS. The question is how fast?

Sometimes it's better not knowing, especially if you don't notice it. It's good your doctor is being diligent.

Good Luck.

[mjan]

Atrophy is normal. The amount can be accelerated with diseases such as MS. The question is how fast?

Sometimes it's better not knowing, especially if you don't notice it. It's good your doctor is being diligent.

Good Luck.

Actually, Big A, it is not normal in my case, not only at the age first discovered, but because I am having more cognitive issues, black outs. She is looking at the atrophy as a source of Cerebellar ataxias which includes atrophy.

As I said, since it is not treatable, I do not really care nor will I have the expensive test. But it could explain why i had MS diagnosis ruled in/out and back in..she just wants to make sure she's not missing anything.

Thanks for your response though,

Jan