optic neuritis

[Melissa072]

Just want to ask a question, x-mas 2006 I awoke with a sore and red, red, watery eye, went to the dr who give me eyedrops and said infection I think, it went away withing the week, could this have been ON, also at this time I had a rotten cold which had me in bed, which is so not like me.
I have had several single episodes of face pain, in the past, as well as recalling having dizziness before too.
Last June I had it all together, tingling, burning, twitching, face pain, and today 12 months later I still have numbish feel to face, both soles of feet and ankles, burning in back and both arms like being rubbed with deep heat, I had the tingling down side of right foot and in toes in left foot for about 7 months 24/7, then it left now returns in heat, or hot shower, or if I put my foot into the sun it tingles, both eyes since last x-mas feel like a worm is wriggling inside them and the last few weeks left bottom eyelid twitches and if I'm in bathroom near mirror when it happens I can see bottom eyelid actually moving from side to side quickly, I have had groin tingling intermittently for 12 months now, and dizziness also which used to worsen if I lied on my back in bed and looked up.
I have had nerve conduction studies done, mri of brain and whole spine twice without contrast and once with contrast, all clear, and a neg L.P. The only thing ever found was high levels of thyroid antibodies but I had them in 2004, my thyroid is fine it is not over or under. I know there is lots of you guys in the same position but what do you do?????????Do we just keep going for mri's hoping something shows or doesn't show? Whatever is affecting me is both sides, both feet, legs, groin, hands etc. If I did have ms would the lesion have to be central to be causing symptons bilaterally? I recently read L.P. is very accurate or very high in detecting ms, I know I have definately had these symptons for a few years now, and they are relapsing, remitting, shouldn't something have shown by now?????????????????????????? Any help or advice I would appreciate, I'm so sick of the whole thing.

[young at heart]

I HAVE HAD SEVERAL BOUTS OF ON AND I HAVE FOUND THROUGH THE YEARS WITH MS,THERES NOTHING TYPICAL ABOUT IT.

YES,THERES A LAUNDRY LIST OF SYMPTOMS, BUT WE ALL REACT DIFFERENTLY TO EACH ONE.

IT CAN TAKE YEARS IN SOME FOR LESIONS TO APPEAR,THEY GO ALL THIS TIME WITH SYMPTOMS AND BOOM THERES THE LESIONS.

AS FOR THE FATIGUE,IT KICKS MY BUTT,BUT I KNOW A LADY WITH MS THAT RUNS 6 MILES A DAY AND IS ALWAYS ON THE GO.

THE MRI SEEMS TO BE THE GOLDEN RULE.BUT I HAVE BILATERAL ON,BUT THE OPTICAL NERVES SHOW NO LESIONS ON THE MRI'S,BUT AFTER 2 VEP TEST,THESE BOTH CAME BACK ABNORMAL.

MRI'S HAVE BEEN A CONTRAVERSY HERE,MUCH DEPENDS ON HOW THE MRI'S ARE DONE,SLICE SIZE AND SO FORTH AND WHAT STRENGTH WAS THE MACHINE WAS CONTRAST USED AND SO FORTH.

HANG IN HERE AND KEEP SEEKING THE RIGHT DRS.,THERES GOOD ONES OUT THERE,IT TAKES A FEW OF US MANY.

T-LYNN

[Melissa072]

Thanks guys, dunno what I would have done this last 12 months if I hadn't found this site.

Thanks everyone from the bottom of my heart..................

[wingnut19]

Hey! What's up doc?  :)

Yes, that makes more sense than you'll ever know....

Keep on keepin' on.....We're here to help, if we can!

HUGS!

Tammy

[Melissa072]

Thanks guys, I really appreciate your help on this site, your the only ones I ask, its a bit hard when I don't mention any of this to friends, and family try to be understanding but they don't really understand, if that makes sense........

[LATW]

On the ON....I have had it twice and yours does not sound like ON. What a wonderful thing it would be if ON went away in a week! :)

My eyes are giving me trouble today and I can't get through the rest of your post...... :(

LA

[wingnut19]

Hi there

Wow, you sure are going through a horrible time, and I'm sorry for that....I do understand how frustrating it can be not knowing why you're having so many symptoms with so few answers....It's horrible!

I don't know much about ON, but I don't think it presents the way you mentioned...Perhaps the doctor was right and it was more like an infection. If I'm wrong, I'm sure someone will come by and correct that for me....  :)

As far as being tired, the MS fatigue is one of the biggest things I've heard talked about over and over....Sometimes it can be so debilitating, people with MS can't move for days....
Again, I'm not saying that everyone with MS presents with fatigue, but I am pretty sure that it's a fairly high number of them that do....

I really hope you feel better soon and get the answers you're looking for....In the mean time, post all you like--We are here for you!

Take Care,
Tammy  :)

[Melissa072]

One more question if someone does have ms should they be tired, or not.
I am hyper, I can't sit, I sit up late at nights, am always on the go.
It's hard to explain, it's my personality, I am a nervy, anxious person, at the best of times but am not shy, if that makes sense?????