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Posted 4/17/2008 3:07 AM (GMT 0)
Hey there!

I had a strange visual thing happen yesterday.  Besides only a couple of very brief blurriness episodes in my left eye and sometimes feeling like I have cotton in my eyes, I have not really had anything wrong with my vision.  Yesterday morning, I was sitting with my mom at her doctor's office and I noticed wavy lines in the periphery of my left eye.  I kept looking over thinking I was going to see a ceiling fan moving or something, but knowing that there couldn't possibly be a fan since I was up against a wall.  It was so strange and lasted only about 10 minutes.  Has anyone experienced this?

Also, today, as I was chasing after my new puppy (we forgot to close the door to the upstairs room over the garage), I fell down without any warning.  I am not sure where my right leg went but it seemed to just not have been where I thought it was.  I have been having problems with my left leg but not really my right.  I have had weakness in both legs before, but this flare I have not had any on the right side.  I just completely fell to the floor, hit my right hip and back and didn't even have a chance to even think about putting my hands out to break my fall.  I am not hurt...I fell right in the middle of the floor with nothing around thank goodness... didin't trip on anything either.  Yesterday I think I dropped 4 different things at the grocery store in the checkout line.  On Sunday, I was having some fuzziness in my head...I just felt like I couldn't focus. 

Crazy things I know.  Just wanted to share my experiences.  Thanks for listening!

Take care,

Kathy

Posted 4/17/2008 4:02 AM (GMT 0)
Hey Kathy

Well yes, i have had just that kind of thing in my peripheral vision many times. Wavey lines or like i'm seeing something or someone moving over there...but every time i look there is nothing there. I"ve never had any probs found in my peripheral vision, but was recently dx'd with ON. Here's the thing tho...i've had it more in the eye WITHOUT the ON.

WOW...i'm sorry about ur fall!!! I"m so glad u'r not hurt!! I can't remember....are u dx'd??? Sorry, it's late! I think u should prob call u'r doc about all this. For sure the vision probs, but maybe the falling and dropping things too..esp if u'r not dx'd. Take good care and let us know how u are.
Posted 4/17/2008 6:06 AM (GMT 0)

Hey Kathy,

That all sound pretty miserable.  Please be careful!!!  Falling can really do serious damage.  I am with Rhonda that you need to at least call your doctor.  I am not too fond of eye issues; I would be going to see an opthalmologist to get that eye checked even if it lasted only a short time.  An opthalmologist ( not an optometrist ) can check your optic nerve for inflammation. 

I know that you are recently diagnosed.  Rhonda is not as good as I am in the memory department lol.  Hang in there and let us know what the doc says if you call.

Love and prayers,

Posted 4/17/2008 11:37 AM (GMT 0)

That suddenly falling down thing is what started me on the road to a diagnosis, now years and years ago.  It would happen so suddenly and unexpectedly, I thought I was having some sort of "mini seizures" or something.

Do be careful. You can really injure yourself falling, and cause damage above what might be happening with the MS!

I've had the strange vision thing too...

Posted 4/17/2008 6:43 PM (GMT 0)
Thanks for all the replies! I did decide to call my eye dr...got an appt. set for Wed. am. They said it could be a type of migraine or maybe stress related, but it would be good to come in and get it checked. I am due for an eye exam anyway...it's been almost two years since my last. Since I haven't been able to wear my contacts much at all, I just didn't realize I was that much overdue. I think I will wait on calling my neurologist about the falling because at this point I am not sure he can do much more for me. I heard from the Avonex nurse yesterday and she is coming on Mon. for the training session. She's going to go over everything with my husband, but she is going to allow me to take my first shot next Friday without her. I figured Friday would be a better day since hubby will be able to watch kids on Sat if need be.

Thanks for listening...those couple of strange things kinda threw me for a loop this week. The things that I have been dealing with for almost two years now I have become accustomed to in a way, but the new stuff.....
Posted 4/17/2008 8:36 PM (GMT 0)
I think that's the really big challenge of MS...the uncertainty, and the "randomness" of it. If you, for example, were in an accident and disabled...once you learned what your disability was, and learned how to work with it (like through physical and occupational therapy)...you'd then get on with your life and just DEAL with it.

But with MS...it's the "not knowing", it's the "new things every time you turn around...assuming you still CAN turn around!"..that make it so darned challenging.

Just when you think you've got things under control and can cope with that...somethin' else comes along.

Take care.
Posted 4/17/2008 10:04 PM (GMT 0)
Hi Kathy,

I hope things go well with the eye doc, and Avonex nurse.......must be a stressful time for you. The other posts sum up pretty much all that I wanted to say!

Good luck!

KAS
Posted 4/17/2008 11:27 PM (GMT 0)
The more I hang around here, the more amazed I am... thanks for sharing the experiences... just before my ON was dx'd in the right eye, the motion/waviness action was happening... I've been jumping thinking things are either moving beside me or coming at me or falling on me or some weird motion near me that makes me flinch badly... I've only recently begun to notice it while driving so that I'm trying now to figure out a coping mechanism for it, so I don't harmfully react while moving. I use to be a speedster, my son tells everyone mom's racing days are over... at least we can smile about it.

Thankfully I haven't fallen yet... but I have had the total lack of presence of my leg suddenly so that I catch myself before the fall. I have gotten so I'm never too far from support nearby... hubby has actually picked up on this really well (he's learning) and won't leave me too much alone where I can't grab onto him if I'm going to lose my balance. Prior to my dx though, everyone just thought I was a klutz... and that goes back 10 yrs easily! My first complaint to the neuro was that I see the doorway and I know to walk thru the middle of it, but invariably I run into the right side of it somehow, I will bump it, nearly every time... now I just move slow and put my hands out more. It's saved alot of bruises.
Posted 4/18/2008 2:06 AM (GMT 0)
Thanks Uppity...the "not knowing"gets me everytime. And literally the "turning around" was what got me in the end when I fell! LOL

Deb, was the waviness all the time or just sometimes? Just curious to know if this can be a precursor to ON or what. Thankfully mine only lasted about 10 min. I didn't think I was imagining it...I just kept looking and trying to find whatever was causing that movement. Crazy! Oh, and I can relate to the bruises...I bump into things all the time...it seems I like to cut corners! And this as a side note...maybe I am alone in this...but the last few days if I have had a drink with a straw in it, it seems as if my mouth has a hard time finding it. My husband laughed...thought it was hysterical. Actually, it was pretty funny. It's okay to laugh at yourself some of the time, right? :)

Anyways, it's good to know I am not alone! Take care!
Posted 4/18/2008 12:51 PM (GMT 0)
Hey Nurse... it's absolutely ok to laugh at yourself... when I "stagger" lose my balance or stumble, instead of being mortified and embarassed like I used to be, I just roll with it and laugh now... if someone's watching, I just look at them and say, it's the "walking drunk" part of MS without needing alcohol! ;) Gotta laugh or I'd just keep crying too much! 2nd hubby used to be unmerciful about my klutziness... he had no idea... third hubby now thought I was just going too fast all the time rushing around... always trying to slow me down (it just made me slow motion klutzy then!) and now he understands more and just stays near, which is a great comfort. I'm afraid to go to a cane just yet as I'm afraid I'll make it my dependence instead of using only when necessary... kinda like if you carry it, use it so everyone can see... so for now I'm good just being concious of my whereabouts.

The vision stuff for me is fairly constant now... the right eye peripheral is just prone to suspect motion so I've just begun to slowly turn (if I turn quickly I get dizzy too) so I'm not giving it as much credit and reacting anymore. The left eye doesn't have that issue. I was painting some doors last month and when door was to the right of me, as I painted the one to it's left, the door on the right kept "falling" and I kept flinching thinking I was gonna lose the paint job to a crash... when I moved back to the door on my left, the door on the right was stable, so I know it's all right eye... ON. Now I want to know what to do about it.

My other major sign of the ON flaring up real bad is that my right pupil is larger than the left (not recieving light as well as the left, it's compensating by enlarging for more light and yet colors are still dimmer) and the eye always feels swollen then... but then it'll go down a bit, return to normal then start all over again. I've connected my eye tics with this too and usually a migraine will follow... it's sort of a sequence... tics, larger pupil, migraine later... migraine may be due to the eye's fatigue and strain too, I don't know. Neuro calls the atypical migraines... I never knew they were migraines, just awful nasty horrible headaches like helmets of pain mostly right sided.

Hope this helps... and yes, this site has been a real boost to my morale with this. I have alot of medical experience (with no degree to show though) and MS has baffled me alot... reading what Uppity, Gretchen and Rhonda advise on here alot and hearing the other experiences has helped tremendously.
Posted 4/18/2008 1:56 PM (GMT 0)

Wow Deb,

What you describe with your eye(s) sounds horrible.  What does your neurologist say about that?  Are they treating it?  Many people get steroid treatments when it gets bad.  I have heard that the ON responds real well to the IV solumedrol.  Ask your doctor. 

You need a cane by the way!!!  Here is the way my doctor said I should check to see if I need a cane; if you cannot stand for twenty seconds unassissted on one leg/foot then you need the cane.  I use mine like that.  Over time, I have come to know when I am going to need it and when I am ok without it.  I have not fallen in quite some time so I am pretty please with that. Having a serious injury on top of MS is not a good thing.  Talk to your doctor about a referrel to physical therapy.  You need some coaching on how to use a cane.  Things like correct height and how to navigate stairs is a must.  I thought using a cane was a no brainer but once I was measured, I cannot stand to use a cane that is not "my size".

Love and prayers,

Posted 4/19/2008 4:11 AM (GMT 0)
Thanks for the info Gretchen but I think I'm still a bit away from the cane part... or I'm in serious denial... I'm so used to just guageing my circumstances now I just cope that way... I haven't actually fallen yet so I count myself lucky on that part... my legs are just extemely weak, horrible strength issues... like at the softball game tonight and bleachers... I never just walk up the middle of bleachers anymore... it's along the side with a railedge to hold onto... so I guess a cane may be in order at some point. I'm gonna have to adjust to that thought alot.

As for the ON, the neuro and I will be discussing in the end of May at my appt... he wanted the MRI's and EP's with it inflamed I think  but my GP feels like you and wants something going on now for it... I'm waiting to see what he suggests and expecting the solumedrol (liquid prednisone) which will be the beginning of the steroids. For now I've got fair warning when it acts up and I guess I could call them little flares... I just don't trust my right vision judgment anymore.

All this has come on rapidly... it seems new symptoms keep cropping up weekly... yep, I'm keeping notes for him. :)

Posted 4/19/2008 12:35 PM (GMT 0)

Hey Deb,

Solumedrol is the IV steroid.  I know that this is a lot to adjust to.  It really is.  That is absolutely the hardest part - adjusting to the "new" you.  The solumedrol is what most people take for a "flare".  You usually have an IV infusion for 3 - 5 days.  It takes about an hour to an hour and half then you are on your way.  It is a very high dose of steroids and not without side effects but it can shorten the duration of the discomfort of a flare.  It is not known for lessening any residuals though (according to my doctor).  Please do consider that cane; talk to your doctor about it.

Hang in there and keep posting.

Love and prayers,

Posted 4/20/2008 3:05 AM (GMT 0)
Hey Gretchen, ewww, dang, was thinking it'd be a nice little shot they could do and I'd be on my way ... my lab people hate my veins already I don't know what they'd do with having to do a treatment like that!  Just doing the kidney scans with contrast gave the tech fits cos the veins roll away (even on the back of my hands!)...

yeah, it's a big adjustment... that truly is the hardest part of all, everyone around me iso used to me just bouncing up and getting about my business and my legs don't go so fast or strong anymore... like today, arriving at the motel to meet my hubby's family after a 5 hr ride (even with 2 breaks) as I got out and approached, one brother in law was concerned and asked what's wrong? Had to explain, it's the legs, they don't work so good anymore and get really stiff... part of the MS issues.... he was shocked. I can relate. I keep thinking I'm just out of shape. Heck I'm super flexible, limber as all get out but move like grandma!

So thank you for the encouragement because seeing and reading and hearing everyone else here has made me realize just how not alone I am in these weird situations I keep going thru. It gives me the courage to note it and tell the neuro now and not just discount it away. Thanks!

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