Prognosis

[Johneb420]

My 30 year old daughter Was diagnosed today with probable ms as the result of an mri, her only symptoms are visual in one eye . She describes it as like a kalidoscope. No other symptoms... Any advice

[sllowe]

Hi JohnB,

Welcome, and thank you for trusting us to thoughts and advice. My only add to the good advice given above is to seek a 2nd, or confirming opinion of the probable diagnosis. Usually docs will tell you do this, but I've seen from members here it's not always suggested.

Where MS is concerned, it's especially important to seek that 2nd from a top MS neuro because there is not "one" specific test to dx, rather it's a clinical diagnosis based on attacks on the CNS, and supporting evidence via labs, imaging, evoked potentials, etc.

Thanks for joining us, and I wish your daughter the best. If MS, early intervention with a disease modifier can greatly slow potential progression, some diagnosed as probable, or even a clinically isolated event (attack) have never gone on to develop definite MS.

-shell

[kwarendorf]

Lots of sage words precede mine. I want to reinforce how important your support will be to her and also that getting the official diagnosis can be a rather lengthy, demanding and frustrating process.

There may be lots more blood work, a lumbar puncture (LP) and other tests. Be patient but persistent :-)

Kyle

[ku111]

I did forget to mention there are so many things that mimick MS and the waiting for a diagnosis is frustrating but necessary sometimes to get the right diagnosis and treatment.  I am sorry for this.  The "unknown" is never fun.  I hope they find out something soon.

[sandythegeek2]

Welcome John. I just joined this forum a few days ago. I was told that I may have MS.  The MRI showed several large lesions in the periventricular white matter. I am still having tests. I have a lumbar puncture on May 15th and blood work the week before. I had ocular migraines and lots of headaches as well as occasional balance problems. I was shocked to hear that my MRI is abnormal and I might have MS. I am 49. I'm sorry about your daughter's news. There is still hope that she doesn't have it.  Are they doing other tests soon?  Keep us posted.

[ku111]

I am sorry you are here but welcome to this wonderful community!  My son is 13 now and we have "highly suggestive MS" but no firm diagnosis yet.  It has been about a year and a half.  We are getting closer and I think they are reluctant because of his age.  There are people here who get a diagnosis quickly and others take a while.  It is very difficult to see your child face such a diagnosis but because of all the help and support I have received from this group, we also try and concentrate on the positives.  There are many activities he can't do anymore but we have found ways and things to replace those things.  I was absolutely beside myself at first.  My world was spinning with all of the dr. appointments, testing and this "new kind of normal".  I read so many things on the internet and found some interesting information but a lot of negative and incorrect information also.  I stopped surfing the net and spent more time here with people who live it every day.  I have asked many questions here and I read all the posts.  I have learned so much but mainly this awesome group of people have given me the tools to help Jordan.  I wish you all the best!  We are here for you!

[JaneK1975]

I am 36 and received my diagnosis last December. The fact that you are here speaks volumes, John. Lulu has given you a bunch of great advice, and I will add a few things from the perspective of a young woman who recently went through the diagnosis process...

For now, understand that she may need you to just be there for her in whatever way she needs you from day to day. I had roller coaster emotions after the doc first told me "You might have MS", and then I had a whole 'nother roller coaster after the diagnosis was finalized. I needed time to work through it all. If she's like me, she may need some time to grieve a bit and be sad before she's ready to start tackling her next steps. Then she will be ready to start fighting, and she'll be so happy to have her dad in her corner ready to help.

When I first found out, I was scared that my life would never be the same because I knew so little about MS. But after a few months, I realize that I am the same person today as I was before I found out, and I will probably be able to live the rest of my life with few people knowing I have MS unless I tell them. This August I'm moving cross country to go to grad school and there is no doubt in my mind that I'll be able to handle it just as well as someone in my shoes without MS. There are many of us living our lives normally, and she can be that way too if she finds out she has it - plus it sounds like they found it early, so she's in a good spot.

Just keep reminding her you love her and support her no matter what happens and you'll help her work through whatever comes her way. Does she have a lumbar puncture or some other testing coming up? How does she seem to be taking it so far?

Best wishes,
Jane

[Lulu54]

Sorry, I jumped to the wrong conclusion and thought you were the mom.  Either way, your daughter is fortunate that you are in her corner and looking for advice.  This is a wise group around here and they will be happy to share experiences and give additional tips.  

I hope to see you around,
L

[Johneb420]

Thank you so much from this Dad

[Lulu54]

Please come back and ask all the questions you might have - we have all been there as patients, partners or moms.  

Good luck to you and your daughter - I hope you get answers quickly.

wishing you well,
Lulu

[Lulu54]

Hi mom, and welcome.  You are probably frantically looking all over the internet trying to figure out what this means. Tonight  I just wrote to a young woman, who is 31, who grew up as a neighbor for 16 years and is like a daughter to me and she was just told today that she has MS.  Her symptoms have been numbness in her arms.  Anyway, here is what I wrote to her and a great part of this  applies to your daughter as well -

Welcome to this side of your new  normal.  The news you got about having MS must have your head spinning - that is pretty much the usual response.  As I told your mom, as crazy as this sounds, if you are going to have MS, the time can't be better.  There are so many treatments available now that weren't out there 20 years ago and there are quite a few more coming onto the market  in the next few years.

One thing I hope you understand even though you probably have a sense of Panic right now (that is normal, too!) this is a slow moving disease. Yes, you have a chronic disease but this is a marathon and not a sprint.  Don't drive yourself crazy thinking everything is going to happen tomorrow , especially doctor appts. and medical stuff, because it doesn't work that way.  

Neurological time moves almost as slow as geological time.  That is a hard thing to grasp when you are newly diagnosed but it will sink in eventually.

From what I have seen  - and I am very active online and locally with the MS communities - it takes a good year to begin to get comfortable with the  idea of living with this disease so you have to remember to be kind to yourself.

There is a lot of information out there about MS - a lot of it is good, but there are also some not so reputable people pushing 'cures' that just aren't so.  When you are looking on line, and I know you will because we all do, be sure to figure out if the site you are reading is reputable and grounded in science and not just anecdotal stories. For instance, there are people who swear vegetarian diets will cure MS - I know you have been veg for years so that blows that theory, right?  

Each person's MS is so different from the next.  Don't assume that you are going to become like the next person you see with MS.  

Your mom tells me you will be getting a referral for a neurologist in town - there is only one group who is MS certified (we all think MS certified neuros who only treat MS are better informed to treat us than general neuros)

When you set your appt, no matter who you see,  be sure that someone goes with you. There is so much information to exchange and it is hard to remember everything that is said.  Someone else in the room helps to remember and to ask questions.  Ideally that should be (her partner), but if he can't go  for whatever reason, I am happy to be your surrogate mom and tag along.  Just let me know - I will drop everything for you.  You know I mean that.

AS for treatments- they will probably give you a bunch of choices.  When you get to that point I really am happy to talk to you about the drugs, how they work and how you can decide what is best for you.  Everyone has a different reaction to these choices and it is a very individual decision and a lot to review.

.... you are a smart woman and can handle this disease.  There are lots of resources and knowledge will be your best ally. School house rock was right - knowldge is power.  Learn all you can, but do it slowly,   Remember neuro time is slow and you have a long time to learn all this.  

Meet with your doctor, get the ball rolling to get a neuro appt set . It usually takes a month or more to get in to see a neuro  - so be patient.

Then I had more personal stuff, but that is the advice I would give to you and your daughter as well.  Get answers, Find a doctor she feels comfortable with and is knowledgeable about MS, then get started on a treatment.