7/2014 UPDATE...HELP!!! Optic Nerve Inflammation?

[abdmom]

Good luck tomorrow.

 

[mom2daisy]

Optic neuritis was my first known MS symptom (six months prior my leg was numb from hip to toe but I didn't see a doctor for it). I was diagnosed after an MRI and lumbar puncture - in total I was diagnosed within 3 weeks.

Wishing you the best outcome and if it is MS, it's really not the end of the world! And, I've had some of my greatest WDW vacations since being diagnosed 2 years ago.

 

[kimblebee]

The MRI will help determine if its MS or not. Like Kimblebee (sp?) I also was diagnosed with MS but do not have any lesions on my optic nerves only in the brain.

I get the fuzzy grey in my eye off and on, but with no pain or any other symptoms. It just comes and goes.

Hope everything goes well.

Thanks for the update. I was actually thinking of you the other day and wondering how things were going. I agree with everyone who says that the MRI will help to make a diagnosis, whatever it may be, easier. I was diagnosed after an MRI as well.

Like others have said, if MS is the diagnosis, it does not mean life is over. It looks like there are a few of us on the boards and so there are lots of people to talk to and ask advice. Maybe someone should think about starting a thread where we can all meet? Just a thought.

Good luck with your tests.

 

[2012DisneyWorldBride]

I don't have much of an update... Went for my MRI yesterday. They did brain, neck, and optics with and without contrast. I was there for 2 hours! Follow up with my dr isn't until July 10th.

 

[sbtrfly74]

Thanks for the update. I was actually thinking of you the other day and wondering how things were going. I agree with everyone who says that the MRI will help to make a diagnosis, whatever it may be, easier. I was diagnosed after an MRI as well.

Like others have said, if MS is the diagnosis, it does not mean life is over. It looks like there are a few of us on the boards and so there are lots of people to talk to and ask advice. Maybe someone should think about starting a thread where we can all meet? Just a thought.

Good luck with your tests.

I think Ive seen you on another thread as well and thought of you as well, today is the first day Ive felt normal since starting Gilenya (2 months ago) and will ask my PC to take a CBC and liver enzymes just in case its not normal. Im trying to get things back to normal. Things change a lot over 11 years, right now fatigue and tinnitus are my biggest culprits. Oh and my DD's can now whip my butt (kinda, im still smarter and faster but not stronger. Big eye opener just the other day my DD20 wrestled me for less than 5 mins and Im covered with bruises and feel like ive been hit by a truck so I guess that funs over lol.)

I don't have much of an update... Went for my MRI yesterday. They did brain, neck, and optics with and without contrast. I was there for 2 hours! Follow up with my dr isn't until July 10th.

I hope they gave you headphones with music

 

[2012DisneyWorldBride]

Yes they did give my headphones and music


Now... To wait until July 10th.... Hmmmmm

 

[Southerngirl71]

I also had optic neuritis about 17 years ago. I lost total sight in my left eye within a day. The eye dr also told me he thought it was ms but also told me he sees a couple of cases a year where there is no true explanation for the cause. He scheduled an appt with a neurologist for me. The neurologist explained to me that even if it was ms they have made remarkable progress in treating the symptoms of ms. I will keep you in my thoughts and prayers because I know how scary it can be.

 

[scbelleatheart]

That is long wait so in the days before, enjoy the 4th! Hope it goes well! Don't dwell on the negative. It only makes you worry more.

 

[2012DisneyWorldBride]

I missed a call from my dr today while I was at work... They left a message saying to call. Why would they do that since I already have my follow up scheduled for July 10th?

Okay now I'm scared... Hopefully I can sleep tonight so I can call them tomorrow morning.

 

[DebbieB]

I missed a call from my dr today while I was at work... They left a message saying to call. Why would they do that since I already have my follow up scheduled for July 10th?

Okay now I'm scared... Hopefully I can sleep tonight so I can call them tomorrow morning.

I would hope they would not give you bad news over the phone. Hopefully it's good!

 

[minnie mum]

I missed a call from my dr today while I was at work... They left a message saying to call. Why would they do that since I already have my follow up scheduled for July 10th?

Okay now I'm scared... Hopefully I can sleep tonight so I can call them tomorrow morning.

Of course you will call first thing in the morning, but my only thought is that they may have had a cancellation and want to move your appointment up. Which would be a good thing.

 

[indimom]

Good Luck Disney Bride. I hope they were able to move up your appointment, or better yet, have good news to share. I'll be thinking of you tomorrow and hoping the best.

 

[LiveYourLife]

OP, how are you feeling??? I hope everything is ok!!!

 

[kimblebee]

Please give us an update when you can. We are all here for you.

 

[Pumpkin01]

My prayers are with you, I hope all is well. Say a prayer to St. Lucy, she is the patron Saint of eyes problems.

 

[2012DisneyWorldBride]

Hey everyone... thought I would give an update on my medical problems I've been helping with some new questions....

June 2013 - My MRI was normal but I had now had dizziness. Sometimes the whole room was spinning and sometimes it was just lightheadness with slight dizziness. Prescribed me Meclizine for the dizziness which helped. Said that it probably stemmed from the Optic Neuritis. Optomologist-Neurologist had me coming in every 3 months for the first 6 months, then to every 6 months after that which I am still on. He did a test every time I came in which determined my Optic Nerve was still thinned but not getting worse or better. My vision continued to improve.
May 2014 – Presented with another episode of the dizziness, this time much worse and with clumsiness (running into things and doorways) and confusion. Started taking my Meclizine again to help the dizziness. Sent me to and ENT and wanted another MRI.
June 2014 – Went to ent for hearing/dizzy/balance testing. ENT determine there was no Acoustic Neuroma or Miener's Disease (sp?). Hearing/dizzy/balance testing came back that my high pitch hearing is lower than normal. Also the testing with the warm/cold air on the right side sent the room spinning which found the ear nerve on right side to be damaged and original optic neuritis was on left side. Balance testing was good not great but most of the dizziness has subsided by the time we did the testing. Second MRI came back normal. ENT and Optomologist-Neurologist wanted me to go see a regular MS neuro dr because they still felt something was going on. I am now also experiencing a patch of numbness on my left foot that feels cold, blurry vision after hot showers or outside temps, and very sore ribs that feel like I have bruises.
July 2014 - Went to MS Specialist (Neuro)... Looked at my 2 previous MRIs of the brain and optic nerves, determined that he felt they missed a very tiny lesion on both MRIs. Wants a MRI of spine, Visual Evoked Potentials test, and wants to do a LUMBAR PUNCTURE!!! Ughhhh no! Very scared about that. Neuro says he is very likely that it is MS.

Anyone ever have a lumbar puncture? Descriptions please and any pain during or after?

I wanted to give you all an update since Ive been MIA for a while... with 2 doctors apts every week for different things Ive been very busy lately! lol

 

[mom2daisy]

The lumbar puncture isn't terrible. I realize that's not very reassuring...I was terrified going in. I'd given birth without anything because I didn't want a needle in my back... The procedure itself isn't bad. The recovery can be difficult. Drink a ton of caffeine while you recover and stay on your back...

I wonder if your rib pain might be "MS hug"? I've not had it myself but have read about it.

Best of luck to you! While an MS diagnosis isn't what anyone wants to hear, I'm sure putting a name to what you've been going through and starting medication will give you some closure.

If you want to PM, feel free. I'd be happy to share my MS experience, if you're interested.

 

[2012DisneyWorldBride]

The lumbar puncture isn't terrible. I realize that's not very reassuring...I was terrified going in. I'd given birth without anything because I didn't want a needle in my back... The procedure itself isn't bad. The recovery can be difficult. Drink a ton of caffeine while you recover and stay on your back...

I wonder if your rib pain might be "MS hug"? I've not had it myself but have read about it.

Best of luck to you! While an MS diagnosis isn't what anyone wants to hear, I'm sure putting a name to what you've been going through and starting medication will give you some closure.

If you want to PM, feel free. I'd be happy to share my MS experience, if you're interested.

I'll definetly take you up on that offer!!expect a message from me after this holiday weekend. . Thank u

 

[RitaZ.]

I'm sorry to hear that you continued to experience problems. I wish you well and hope that you get a definitive diagnosis very soon. Take care.

 

[carrie1626]

I've had Optic neuritis 4 different times. First when I was 25 last when I was 32. Now 50.

Each time they started with the "Probably MS" speel.

I do not have MS. Take a deep breath and keep off the internet if it is driving you crazy. Sending good thoughts your way.

I too had the scare of Optic Neuritis. Did the whole MS workup including a brain MRI.
NOTHING The best thing that came out of it was that I started seeing an eye specialist and then I got my mom in as a patient too.

Best wishes for a normal outcome