Can someone help?

[jcm181]

In March 2007 I started to get a scotoma in my right eye.  It got pretty bad where I couldn't really see anything out of my right eye.  I described my vision as if everything looked electric or like I was seeing a TV screen that had the snow.  I saw retina specialists, got an MRI with and without contrast, and then saw a neuro opthalmologist.  My neuro opthalmologist said I have optic neuritis.  He said my vision would go back to normal or it may not correct itself all the way. My MRI has one white lesion where the radiologist said it could be due to many things (a migraine, a virus, or demyleating process). My neuro opthalmologist said I am at risk for MS but didn't present anything else that would have him diagnose me as having MS.  

So...it is September 2007 and my vision has gotten better but not 100% - it is good enough where it doesn't bother me.  But one morning I woke up and my right side of my face and head was numb and now feeling as if I have pins and needles in it.  My right hand kind of had what I would call a frustrating feeling...like I could move it fine, but writing and thinking about moving it was just "frustrating." I don't know how else to describe it.  My hand is better, but my right side of my face hurts like I have been pricked or burned.  I saw my PCP and had lyme test and other blood work to rule out infection and all came back clean.  I have an MRI scheduled for next week and then I am seeing a neurologist on the 21st of September.  Hopefully there will be no additional changes from my March MRI, but I'm hoping for some answers.  

Do you have any idea what this could be?  If you do not, can you provide me with some good questions to ask my neurologist when I see him and what tests I should ask for.  Thanks so much.

[jcm181]

Thanks all - just back from Neuro Opthalmologist.  Based on my MRI (no change) from last time and my eyes - they said I looked good to them.  But they referred me to a Neurologist that is an MS specialist.  Apparently really good.  He was going to try to get me in next week or before end of September.  I'll be back to tell you how it goes.  Thanks so much for all your advice and all your feedback.  It is very appreciated.  I pray for you all everyday.  

[T-lynn]

My coarse of MS hasn't been typical.I was first dx'd that I had MS in 1998,lumbar lesions and ON,disregarded the DX and didn't have a flair -up until 2004.Was not on any meds until rediagnosed in December of 2006.

I always knew it was there as in numbness,the gaited walk and so forth,

Now I'm on rebif at 41 ,I wear leg braces,suffer from chronic spacticity,fatigue and numbness.In 1998 I had little ones and somedays were a struggle but made it through the rough times.

As Quix I am disabled ,2 failed lumbar surgeries and the MS has taken a toll on my legs.

I still lead a semi-normal life,I work out at a fitness center monday through friday,trying to keep up with 2 teenagers and sporting events.I try to keep as active as possible,but I will admitt I do take naps some can be an hour and  up a couple of hours then back to sleep,somedays I take a 5 hour nap and I have days I sleep all day.This has been a fairly new symptom in the last 2 months.

Please keep in mind Quix and I may not be the correct examples,this disease effects us all differently and we have other disorders added to our MS.

Quix gave you fantastic advice.

T

[Quixotic1]

I'm really glad your neuro-ophthalmologist is great!  You can't go wrong having a bright, caring and alert doc in your corner.  I would say yes, definitely set up an appointment with an MS specialist, preferably one associated with a large clinic.  They are often more up to date.  If the neuro that you're going to see on the 21st really is "with it" then you can stick with him.  If you're unsure, then you have a second opinion already cooking.  And, actually, a second opinion on a matter of this magnitude is always a good idea.

Having MS (if that is the case) should not stand in your way of having the family you want.  If you are on meds and you decide its time to get pregnant, you stop the meds for a month or so before trying.  MS symptoms typically get far better during pregnancy, but can slam you in the 3 - 4 months after giving birth.   There have been studies showing that, in the long run, women do not risk greater disability by having children.  The things to consider would be attempting to have a schedule and lifestyle that would aloow you to take care of the kids, maybe have family close, and of course a spouse who wants to participate in child rearing.  (not all do).  Also, because increased fatigue can be a big issue in MS you would want to consider how many kids you want to have.  But, basically I'm saying you should plan on the life you want, just allowing for down times.

The children of a parent with MS have only between (depends on what you read) a 2% - 5% chance of developing MS.  The general population has about a 0.12% chance.  It is higher in people of northern european descent and in people who spent the first 15 years of life in the northern lattitudes.

Statistically (which may or may not be true for any given person) being young, female and presenting with optic neuritis are all indicators of a less aggressive course for the MS.  Just so you hear something encouraging here.

Disease Modifying Therapy - the Interferons or Copaxone.  Depending on the results of your MRIs you may very well be well assured of a definite diagnosis with the LP.  If there is any doubt, or if your doc wants to be very thorough, they want to do an LP.

I don't think my course with MS is a very good example to hear.  For one thing, I was totally disabled by another disease (which has caused sever, intractable vertigo) before developing the MS.  So I was already slowed to a stop.  Then with the fatigue and the leg weakness and spasticity of the MS I was really flattened.  I have several factors which point to a more disabling course for me - older age at diagnosis (55), and presenting with brainstem and motor disability.

I hope others jump in and describe their courses.  This is a fairly new forum and only a few people here have had it more than a couple years.  I hope others chime in.  The meds for MS don't really "help" with present life.  They act to slow the progression of disability and to make relapses less frequent, but they can't undo damage that has already happened to nerves, and often can't relieve the symptoms one is already left with.  So you take them to have more time before becoming disabled.  BUT, more and better meds are on the horizon, and we all have hope that one of them may stop the disease in it's tracks.

Quix

Quix

[jcm181]

Wow - you are so nice to spend the time to write all this.  I appreciate it very much.  I just got back from my MRI.  It was only of the brain and with/without contrast.  

A few comments and questions:

1) I am going back to my Neuro/Opthalmologist.  He is spectacular and did go over all the risks of MS with me, but based on everything at the time, he didn't feel he could definitively say MS - which satisfied me at the time since my ON did seem to get better and it feels good when someone says you probably don't have a disease.  He did say to call him if anything else happened.  I will see him on Friday of this week and will make sure to handle my visit as you specified.

2) I am also meeting with another Neuro on 9/21 so I will see what he has to say.  I feel I should try to get an appt. now with an MS specialist to just have it on the books in case they say to meet with on - thoughts?  I live in Philadelphia area (know anyone good?).

3) Also, I am 29 years old.  No kids and would like to have some.  If I start therapy now if they tell me I have MS, I feel like I can't.  Is that true? But I wouldn't want to wait and get worse just to have a baby.

4) When you say Disease Modifying Therapy - what do you mean?  Are you talking steroids OR the MS drugs?  Shouldn't I get something that says - YES YOU HAVE IT before starting (i.e., spinal tap)?

5) Also - what is life like for you?  Are you on meds?  How do they help?  I'm kind of scared.

Thanks so much.

[Quixotic1]

Hi, I have been absent from the forum for a few days, but I am a retired physician with MS and I can give you a little more data than the ophthalmologist gave you.  Of course no one online can diagnose anything, but I can talk about the things you've told us in the context of MS.

Your risk of having or developing MS within the next few years is fairly high.  If you've been reading along on the forum, you may have seen the statistics.  Optic Neuritis is a pretty good predictor of  MS.  In people who have ON and NO OTHER symptoms and a normal MRI, the risk of developing MS with 2 and 1/2 years is 33% (rising to 42% within 8 years).  The risk is higher with even a single brain lesion and over 50% with multiple (3 or more) brain lesions and other suggestive symptoms.  You probably qualify right now as having (more than) a Clincially Isolated Syndrome.  That is one characteristicv attack of symptoms with an objective physical defect (optic neuritis) and a lesion on the MRI.  The recommendation is to begin Disease Modifying Therapy when the doctor finds a person with CIS.  You actually have more than this because, it appears that you are now having a second attack (relapse).

Because MS can be so relentlessly progressive in causing disability, there is an urgency to identify people who have had some suggestive symptoms or problems (like ON) who have a high likelihood of progressing to full-blown, Definite MS.  When these people are identified the current International recommendation is to begin Disease Modifying Therapy as early as possible to prevent the progression to full disease.

Right now your are having symptoms that are at least a month (required time) from the previous attack during which symptoms were stable or improving.  These new symptoms are in a different area of the Central Nervous System.  This fulfills the requirement in diagnosing MS that a person have attacks in the CNS in more than one place over a period of time.  The rest, MRI lesions, or other positive tests will be just confirmatory.  This assessment will be fairly easy if the neurologist you see has a good deal of experience with MS.  If not, he/she may say something like, "You don't have enough lesions."  This would not be a good sign that this is the neurologist for you.

Further testing you will need should be a repeat MRI of the brain, but ALSO (I hope it is not too late!!!!!!!!!)  MRIs of the cervical spine and of the thoracic spine.  You also may need a test called the Visual Evoked Potential, if the neuro wants further evidence of ON.  The neuro should do a thorough neuro exam - head to toe.  Including testing of the nerves in your face, eyes, muscle strength (neck, shoulders, arms, wrists, grip, hips, knees, ankles and toes) reflexes, walking, balance, sensation to pinpricks.  It should take a good 30 minutes or more.

When you talk about the use of your hand being frustrating, I wanted to ask if it feels like something I have from time to time.  When my right arm is acting up, sometimes it feels like I'm trying to do things "with someone else's hand."  It doesn't seem to want to cooperate with me.  Is your feeling something like this?

I agree that you should not suggest to the neurologist that you suspect that you have MS.  Be prepared to describe what your symptoms are, how they appeared and how long they have lasted.  Describe any little things like the use of your hand being frustrating and why.  Tell them what things you can't do, but could do earlier this year.  Tell them how you life is changing, if it is.  

I'm sorry I was late in getting to you, but I hope you see this.  Welcome to the forum.  If anything I said needs clarification just ask.  I should be on the forum everyday now.

Quix

[jcm181]

Thank you so much.  This forum is very nice and helpful.  

[grannyhotwheels]

We will be praying for you this week as you have your MRI.

Carol

[T-lynn]

Have you seen this neurologist previously,if not make sure you take past records,the DX of ON from the opthamologist and your MRI films.

Make sure he understands your symptoms completely.

Theres the possibility it could be MS or one of the numerous mimicers.Let the neuro do his evaluation first.

To be honest most Neuro's don't like patients asking for test or trying to self diagnose.

take a time lime of symptoms,when they started how long they lasted and so forth,If he is a good neuro he will explain the mri's if not ask him to do so.If he suspects MS or another disorder he will order further testing without you asking.

I hope you get some answers.