I could use your help..

[Heather3418]

I just received a note from my daughter (who was just recently diagnosed with MS) and thought maybe some of you could help me, to know what to tell her and explain to her.

She wrote the following in an email:  "Double vision has gone, in it place is a black spot and very blurry vision especially in the car or if I am in motion seems to amplify this. I am very dizzy more often than not and the numbness in my legs and arms has increased. My walking has been off as well seem to not be able to walk in a straight line. Not sure what that is all about. I am increasingly nauseated anymore I feel as if things move on me not really sure how to explain this. Honestly Mom I just don't feel so great.  Wish that Dave (her husband who has severe Lupus) would be of more support. Has not been a fun few weeks off from work, I can tell you that."

My daughter just finished 3 days of Solumedrol about two weeks ago.  It helped to clear her Optic Neuritis, but I notice that she says that she now sees a black spot in her vision, which I know is from the O.N.  Damage to the Optic Nerve, which I still have myself, since my first attack of O.N. 14 years ago.

I would think that the numbness in her arms and legs, may be from a spinal lesion and possibly at the very beginning of her cervical spine.  She has not had an MRI of the spine as yet.  (Stupid ordering doctor)  She had a panic attack inside the MRI when she had the test done of her brain.  She will need heavier sedation to go through an MRI of the brain and spine, this time using MS Protocol and contrast, which was not done before.

As a mother, I feel helpless.  I thought I would step back and offer this post to some of you, for your advice.  I am so close to the sitation, that I don't want to tell her anything that may scare her.  She is really starting to worry me.  She was told that she was not allowed to drive by her doctor's, but she continues to drive.  Her husband isn't suppose to drive either, because of his vision, so she said it's the lesser of two evils.  Somebody has to do it.  It scares me as a mother, that she will have an accident and hurt herself and someone else.

Any advice from all of you, would be sincerely appreciated.  I really do feel lost as a mother...

Big Hugs,
Heather

[jensequitur]

If your daughter wants to avoid worrying you, she could always try the MSWorld forum.  I'm over there regularly.  There's a lot of people there who can help, and they're real friendly.

Wow...  Isn't there any way you can talk her out of driving?  Maybe talk to the hubby - I don't know how close you are to the husband.

Hey, ShadowsSister - the black spots are actually damaged portions of the optic nerve.  Floaters are transparent blobs in your vision that seem to float exactly in the center of whatever you're looking at.

[syndismilez]

Sending you my thoughts and prayers to you in
your difficult situation!!!  Lean on this forum as much as
you can :).  You have been support for all of us, now we can
give back. Hopefully your daughter will join in her own time.
Hugs
cyn

[Heather3418]

I really feel strength from all this love and advice.  I do not suffer from all the dizziness that my daughter does.  That's why I really cannot give her the proper advice.  I have spells very rarely, but not often enough to be any kind of personal expert on the subject.

I accept all your prayers and good wishes.  I am soaking them up and gaining strength from them.  Trust me, they are of a trmendous help to me and to my daughter.  I have to admit that I do feel helpless.  I just want to take all her hurt away and take on this dreaded disease myself.  I can handle it.  She has enough going on in her life...Lord give me her symptoms, I'll deal with them.  I'm an old lady...she has her full life ahead of her.

If she keeps driving, I know that what I need to do, is place a call to her doctor and leave it in her hands.  I don't think my daughter realizes that she could pass out at the wheel.  Her children might be in the car with her when it happens or God forbid, hit someone else's car.  I had to do this when my father had severe dementia and was having accidents and not reporting them.  I guess I have to gather up enough strength to do this again.  It broke my heart last time, but I did it for my father AND for the other dear souls on the road.  I think my Father was super mad at me for that, but I may have saved his life and that of someone else.  It's something I had to do.

I have mentioned this Forum to my daughter several times.  She says that she is not ready to join, but that will come in time, when she goes through the acceptance stage of this diagnosis.  I will keep trying to re-inforce to her, how vital this Forum can be to her understanding that she is not alone.  It may be that she does not want to join because her mother is already a member.  There may be things she wants to say that she doesn't want her mother to see.  I would understand that and I am sure you would too.  Perhaps I can suggest several sources of where she can go for online help.

Thank you again fellow family.  Your thoughts and prayers mean everything to me.  Your friendship means even more.  I have been a member of this Forum for over two years now and I just don't know what I would have done without it.  It's been a life-saver for me, many, many times.  I'm sorry I am not posting to all of your posts, like I used to. I've been kind of "off" my game, since my father died and I've had to take my step-mother through the legal system.  Long story.  Perhaps another day.

Gods' blessings to ALL of you and much "Earth Mother" love,
Heather

[ShadowsSister]

OH Sweetie, I am so sorry !!!

Your daughter has to stop driving ! Seriously, it would be awful if she were to hurt anyone including herself... You have to inform someone, I know you don't want to do this, but maybe if you tell her you have no choice she'll think clearer about it and stop on her own. There is help available but she has to ask for it... The main thing is she has to be made to realize she is like a loaded gun behind the wheel of a car right now... Please step in before you are sorry you didn't speak up

As for the black spots they are called floaters, and almost everyone with MS has them, they are a nuisances but will come and go. She should get her eyes checked out if she hasn't done so yet.

I know this is so difficult for you, but the main thing you can do is just what you are doing, be there and be supportive, listen to her but always be honest with how you respond especially about her driving, on this issue you MUST Step up and intervene for her sake as well as other on the road... I know it won't be easy, but the what ifs are just too huge for you not to do something...

I will continue to keep all of you in my Prayers, again I am so sorry this is such an awful time, but it will get better...

Sending you love filled hugs daily {{{{~!~}}}} DJ

[saveone]

i don't know that I can add anymore than the others have.  I was telling my honey this evening as I reminist about my grandfather that he never bought me more than a hot dog or milk shake but I knew he loved me and that was the greatest gift of all.  I said I would not have traded his love for anything in this world.

I am sure your daughter feels the same way about you or she would not have reached out for you.  Just continue to do what you have always done...be there for her, to help her laugh at herself, to listen to her, to cry with her and to help her to stand back and fight another day.

Sending you hugs because I know as a mother we need them when our children hurt.

terry

[Deb61]

I think you've gotten really good advice.  I too have a black spot in my right eye where the ON was.  

Heat, especially as hot as it is now, makes my eyes extremely blurry.  Perhaps starting the air conditioning in the car before getting in to drive would help.  I wonder if heat is causing the weakness, numbness and the nauseousness.  I have a really hard time when I'm overheated.  

Sunglasses do help.  I wonder if it is because I decreased some stimulus . . .

Has she been sleeping?  Her meds may have caused her to lose sleep.  Lack of sleep contributes to making me feel really awful and my vision to be even worse than it already is when I'm tired.

Hugs,
Deb

[PastorDan]

Little I can add to what's been said here; as usual, our forum family has come through in a wonderful way, full of compassion and insight.  I will say that I will pray for you and your daughter, and for her husband.  Adding to what jens said, stress not only that she could hurt herself, but she could hurt others if she makes a simple mistake while driving in this condition.  God bless all of you.

[sllowe]

Hi Honey,

Is she like you? Would she feel better with a plan of action ontop of just the right words of comfort?

Just trying to get a feel for what would be best, sounds as if the the lack of support/help no matter what the cause - that she may just need someone to step up help with regular things so she can hunker down and deal w/the feeling bad part and current limitations she is experiencing.  Kind of a "I'm doing this" so you can do this kind of talking to...

You are not helpless (just feeling that way), just being who you are means the world to her - please trust that sweety to move you both through this spot..

BIG XOxo
shell

[Udkas]

Hi Heather,
You already have some fantastic advice to offer her from other members and your own personal experiences.  If she must drive try and do it in the morning when she is less likely to be so fatigued.  Baby steps, break tasks into small steps and try not to do it all on one day as this will only fatigue her and make the ON and the dizzy spells worse. If things are getting worse maybe she needs to contact her neurologist again... that's what we pay them for!

All I can say is that there is no other love like a mother's love, hopefully this episode will pass and things will get better but reassurance, love, support, someone to talk to are important, I know that the ability for me to air my fears helps me, just having someone to talk to.  
Does your daughter know about this forum, would she join?

Thinking of you both.

Udkas.

[Wobbly]

I'm so sorry to hear that your daughter is having such a rough time.  It's not easy for a mom to hear this and feel helpless.  Mom's always want to fix things ..

as you know Heather one of my symptoms is Vertigo or dizzy spells... and off balance.  I will drive sometimes when I feel the dizziness not to bad, but I call one of the Community Services we have here and ask if they have Volunteer Drivers which they do and book a driver when I need to go to an appt. etc. I don't know if that's possible for her.

when I was on Prednisone for a week it helped, but when I stopped the meds it's came back horribly for quite a few weeks.... and I was off balance for quite awhile.  

rest up as much as you can.. easy to say, but can be hard to do.

take care, wish I could help ..
Hugs
wobbly
dx

[jensequitur]

Excellent ideas from rendean...

It sounds very much as if your daughter's in the same place I was in 2007.  I had ON, so my eyesight was (and still is!) really bad, and I kept having this flaring black spot in my vision.  Serious problems with walking a straight line - kept veering to the right.  And arms and legs were very weak, to the point where they felt like jello.  And the vertigo... sheesh.  It's a good thing that it didn't make me nauseous - and it's strange that it didn't.

So what my MRI found is that I had a lesion in my right cerebellum - it caused a lot of muscle weakness and tremor.  It might have also caused the nystagmus.  There was also some enhancement of the right ventricle, and some punctate lesions in my periventricular areas.  

For a long time afterward, moving my head made me feel weird and out of sorts.  Typically I would try to move my eyes without moving my head (the old prison look!) so it wouldn't set off my vertigo.  Bright light hurt my eyes, especially contrasting light - sometimes it felt as if it was trying to set off a seizure or something.

The only thing that really helps me is sleep, and time.  Every time I get over a major symptom like vertigo, another one moves in to take its place, like right leg weakness or myoclonic jerks.

Personally, I would emphasize to her the importance of not driving.  She could end up hurting herself badly, which would make her life even more difficult than it is now.  I don't know what the alternatives are - personally, I am very lucky to have a darling husband who is still alive and willing to take me to work.  I am unsafe to drive in the mornings, but in the evenings I seem to be a bit more alert and capable.

[rendean]

I am sorry your daughter is having such a rough time lately and I know as a mother it is equally tough on you.

I can relate to the symptoms your daughter describes. I have not yet had optic neuritis but I have blurred vision and vertigo and/or dizzyness similar to what your daughter described. I , too, have numbness and tingling in my legs and left arm.

Below are tips I have discovered myself or received from various docs who could not fix the problem and unfortunately think these symptoms are permanent. I'm not sure they are permanent..they do wax and wane depending on my stress level, health, etc.

Descrease the stimulus to her eyes. That means wearing sunglasses, especially while driving to decrease the stimulus received by the brain.  According to my neuro-opthamologist resident, I need to make sure my eyes are properly hydrated since I have dry eyes. A dry eye can cause blurriness due to fact in causes an uneven film over the cornea and results in blurred vision. Now, I use my lubricating eye drops that I despise because he was right it does almost eliminate the blurry vision.

I finally drove downtown yesterday to take my son to he doc. Had no choice. First long drive in 2+ months. I used Pastor Dan's description of his feeling of safety and security while seated in his car. It added to my confidence and gave me peace about driving my sick child some 30 miles when I hadn't driven in so long.

Another thing that I did to help me drive, especially when I felt dizzy, was to make sure I adjusted my side mirrors so that I could see the lanes clearly on both sides of my car. This makes turning your head, and thus increased stimuli, unnecessary except in extreme circumstances.

I was prescribed Antivert several times over the past 4 years. It did nothing for my dizzyness and accompanying nausea but it might work for her. Over the counter it's known as Bonine...same stuff. In fact , my pharmacy (at a Publix grocery store) sold me the generic that they keep behind the counter. The generic bottle of  100 chewable tablets of meclizine was $5.70. OTC Bonine is $15 for 25 tablets.

I have numbness in my legs and arms and persistent leg pain . This is certainly a distraction to driving and I do not drive on the days when it's at it's worst. I did not have any visible lesions in my MRIs that correlate with this symptom.

As for MRI sedation. I am now claustrophobic, never used to be as a child, and have to take Ativan to have an MRI. The doc usually only wants me to take one mg. Doesn't touch it. Then my former MS specialist told me to take one mg an hour before the MRI and if I was still nervous to take a second one while in the waiting room. Worked like a charm and I now I usually fall asleep in the machine. Of course, I DO NOT drive myself to these MRI appointment as I'm too sleepy and dangerous at this point.

I hope these small tips help a little. I have the luxury of having several drivers in my household, although the youngest teenage boy driving is as nerve-wracking as me driving :-).

Sending good thoughts and hugs to you and your daughter.

Ren

[Lulu54]

Our dear Heather,
If only I could wave the magic wand and make everything ok, or at least make the right words come out of your mouth or onto your computer screen.  What she is experiencing is scarey for all of you.  

I was just reading last night about the Multiple Sclerosis Foundation 's assistance programs.  I was unfamiliar with this group, but it appears they offer lots on things, including transportation assistance and home health care.  You can check them out at

http://www.msfacts.org/programs-activities.aspx

Perhaps they can be of some help to your daughter.  It would worry me too that she continues to drive because she has no other options.

I hope you find the right words to connect with her.

my best,
L

[Valerie64]

It's so hard to watch your child (even when they're grown up) become ill and you never want them to go through what you do,

Thankfully I don't have the vision problems but I do have the arm/leg numbness and I couldn't walk at all for a while, it's a lot better now but it was frightening at the time,

I have a 1cm brain lesion, never been MRI'd for the spine yet - this may help : when I had my head MRI, they told me to shut my eyes before I went into the machine and keep them shut until I came out, they blew cool air on me the whole time and it didn't feel like I was in an enclosed space

this is all so new to me, sorry I can't help more, take care

Val x