How bad is this MRI?

[jknichols]

My sister was diagnosed with multiple sclerosis just last week.  Her only symptom is optic neuritis of one eye.  Her neurologist had originally said that he would see her again in one month to discuss treatment after more tests were performed, but today after viewing her MRI (previously he had only had the MRI results read to him over the phone by the radiologist), he called and said he wants to see her next week. Naturally she is very scared.  She got a copy of the MRI results and it says that she has too many lesions to count and black holes. It mentioned both T1 and T2 lesions.   Does anyone know how bad these results are in terms of prognosis?

[jknichols]

I found the other thread called "MRIs, Lesions, and Symptoms".  Thank you so much for your patience and help!

[Quixotic1]

It is well excepted that in the majority of people with MS the disease has been at work silently for a long time before the first symptoms.  When the majority of the lesions are in the brain, this especially true.  We know that about 90% of the brain is not used.  We really don't know what it does or could do.  So MS lesions in this 90% will not be "eloquent" that is, they won't speak up with symptoms.  At some point a lesion will hit a part of the brain that has direct function, like the optic nerve in your sister's case.  Then, there will be a symptom.

There is a thread called "MRIs, Lesions, and Symptoms," which I will find and bump to the top.  There is a section in it about whether Symptoms will always match Lesions.  You might find it helpful.  

In 15 minutes, the doctor can tell your sister the diagnosis, answer a few of the important questions, tell her of the need to get educated on the disease, hand out some information and/or sites on the internet to find information, and have her processing this until the next visit which was already scheduled.  It's a way to jump-start the adjustment and education process.  Full discussions of treatment options can be in another week or so.

Good luck,  we all extend an invitation to your sister, family and husband to join us and ask questions.   Quix

[jknichols]

One last question that I forgot.  The doctor's office indicated that he was "squeezing her in" and that the visit would be very short, only about 15 minutes.  What could he possibly be going to do that only takes 15 minutes?  It doesn't even seem like enough time to go over the treatment options with her.

[jknichols]

Thank you for your honest post.  I realize that you are a physician and I respect your clear, honest opinion.  Any clue as to how she got this bad without having any symptoms before the optic neuritis?

[Quixotic1]

Your sister needs you.  Too many family members avoid the topic, dismiss it's seriousness or "hover" with pity.  None of those things help.  You all need to be educated on this disease and we will be here to help you with all that.

I need to clarify the explanation of what all the lesions mean.  The prognosis and risk for disability is not based on the number or the location of the lesions.  It is based on the total volume of the lesions.  Also described as the total "mass" of brain tissue that is diseased.  Your sister's lesion load, by the report you gave us is very high.  The existence of multiple "T1 black holes" is not good.  Jon is correct about the risk of cognitive issues is dependent upon the location.

But, the description doesn't tell us how much of the total brain really is involved or whether the brain appears to have already begun "shrinking", a process called "atrophy."  The presence of atrophy is something that, if it were me, I would want to know.  Her risk of a more serious course would appear to be higher, though no one can predict this with any certainty.   MS is not a death sentence.  The view the public has of it from the media is far worse than it usually is.   Be frank with her about your wish to support her and ask if she would like you along.  I would not tell her of my post and comments.  She needs to hear her news from her doctor.  

She is the same person that she was, before this news.  Respect her, but also realize that one of the most common things people with MS suffer is severe fatigue.  Little bits of help with daily stuff may be very welcome.  Just ask your family not to "avoid," "hover," or "dismiss."

I realize that my post sounds a little more ominous than the others.  Please accept that it is offered to help prepare you for what your sister may hear in the upcoming visit.  BTW - by calling her in early, it was a message that things "appeared" worse than he had hoped.  However, this is a weird disease.  It progresses as it will.  She may not have a severe time all the way through.  And she may respond very well with the meds they have available.

Good luck, and your sister is a lucky woman to have you caring so much that you seek advice on how to help her!

Quix, MD

[grannyhotwheels]

Your sister is so blessed to have you on her side.  If you where to read back a few pages you would see so many different stories of how some of us don't get the support we think we should from our families.  It is so very important that you stand beside her through this.  I agree that you should at least offer to go with her and her husband.  It would probably mean a lot to her.

I'll be praying,
Carol

[Johnny Utah]

Hi, I don't think you would be sen as the "interfering sister-in-law" however the choice is hers. I have found that it is important for family, even if only through marraige to be supportive. MS is a disease that can show no external symptoms. Its beneficial for others that are going to be around someone with MS to become educate about the disease. Going with her will not educate you, but it will help her on an emotional level. I thought I took it pretty well when I was told they think I have MS, but my neuro looked right at me and said you seem upset. And I was. Family is an important bond.

If you don't go with her stick around here and educate yourself about this disease. It will be very important to be supportive which you seem to be just by the fact you are here asking questions. What a nice sister-in-law you must be.

The number of lesions as you have been told does not correlate to disability, again its the location. When it comes to cognative functions, 3 large lesions may be far worse that 30 small ones.

Johnny

[jknichols]

Thank you all for your support! I guess we will just have to anxiously await the doctor's appointment. It is terribly frustrating that he calls and says he wants to see her "on an emergency basis" but then doesn't schedule the appointment until a week away!

[Heather3418]

Believe it or not, the "amount" of lesions do not pinpoint the degree of disability.  It's the "location" of the lesions that makes a difference in one's outcome.  

One lesion located in the right place in the brain or spinal cord, can cause great disability, while dozens of small lesions can mean slight disability or sometimes, no symptoms at all.

I do understand why you are terrified for your sister.  I am for one; glad to hear that she at least has a Neurologist that stays on top of everything and doesn't seem to waste time, when he is concerned.  Until you have all the answers from her visit, try not to worry.  Easier said than done..isn't it?

You and your family will be in my prayers.

Best Wishes, Heather

[Roxie0818]

why don't you ask her if she would like for you to go along...  she is lucky to have you care.. i didnt have that  :)     its frustrating at the beginning. with everything being new... and different options... and understanding the MS lingo......there are great sites to look up.. National MS society for starters.......she will need all the support.. and its people like you that get people like her thru this.........  we are hear to listen if nothing else...  we do lots of praying for one another :)  but knowing that we arent alone helps!!

god bless you for helping her
Take care
Roxanne

[jknichols]

Thank you so much!  Her husband will be going with her to the appointment.  I wish I could be there but they are newlyweds and I don't want to appear as the interfering sister-in-law.

I am getting so scared and frustrated (and I can't even begin to imagine how she feels). The doctors so far seem reluctant to give too much information, but every little piece they do give makes it sound worse and worse.

[sllowe]

Hi there!

I'm so sorry I can't interpret, and hope the Dr will shed some light on those reports.  You or someone will be going with your sister to the Dr next week right? Just by you looking for answers here, I'm sure she has you for a lot of support and comfort.

I'm bumping your question up so your sister gets a good long line of healing prayer from all of us!

SL