It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Multiple Sclerosis Message Board

MS and Vision Loss

Post New Thread   Closed Thread
LinkBack Thread Tools Search this Thread
Old 08-26-2011, 02:24 PM   #1
Getting Close
Join Date: Aug 2011
Location: Wilmington, Delaware, USA
Posts: 6
Getting Close HB User
MS and Vision Loss

I have been told by a Neuro Optomologist that vision loss appearing on recent testing is the result of MS. However, my Neuro Immunologist at the MS Clinic, wants to stay with my dx of Transverse Myelitis from 2002 because there has not been a change in my brain MRI since 2006. (And the leision on the 2006 brain MRI was small.) I have had ON three times. My Neurologist from the MS Clinic has told me that the only reason to be dx with MS is to go on injections and injections are only to prevent or reduce brain leisions. Two questions: (1) Is there anyone out there who was dx without brain leision? (2) Has anyone gone on injection theraphy just because of vision loss? If so, did it help? I have been told that my vision is at risk, so I want to do what is best. My PC doc is recommending another opinion. Thanks!

Sponsors Lightbulb
Old 08-26-2011, 02:48 PM   #2
Senior Veteran
Join Date: Sep 2006
Location: USA
Posts: 11,793
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: MS and Vision Loss

Getting Close,
First of all, sorry to hear of your troubles. Secondly, you keep referring to a brain MRI. Have you also had your spine imaged? The brain stem, and the Cspine are two areas, which if not ordered, arent checked and are also "hiding" places for lesions. Its not ONLY the brain which can cause Optical Neuritis. I have had ON 3 times as well, its awful, however, I also have over 50 lesions...

They wont give you a MS dx, or allow you to start MS therapy Disease Modifying Drugs without a definative MS dx, and you dont want to be on these drugs without it....Check out the revised McDonald criteria, it will tell you exactly what you need to have in order for a doctor to give you the MS dx. There is a good chance you have MS, even if your brain isnt showing it...also, how long ago was that MRI? MRIs can change literally week to week. Was it done with contrast? If it wasnt, there could be lesions which were too small to be picked up by the last MRI...

To specifically answer your question, no one has been dx without lesions that Im aware of, but they dont have to be BRAIN lesions, they can be elsewhere...and vision loss is NOT a reason to start MS disease modifying drugs...have you had IVSM? The IV solumedrol is one of the very best ways to reduce the inflammation of the optical nerve, reverse the damage, and help prevnent future ON....have you spoken to your Neuro-Opthamologist about this?

One last question for you. You seem to have a great team of specialists, however you havent mentioned a MS you have one of those? If not, thats who I would consult with next...immunology, doesnt usually dx MS- your Neuro-Opthamologist might, but a MS Neuro will definatively order the right tests and either dx it, or rule it out...

I really hope you feel better soon.
RRMS- dx 05

The Following User Says Thank You to MSNik For This Useful Post:
Getting Close (08-27-2011)
Old 08-26-2011, 03:02 PM   #3
Getting Close
Join Date: Aug 2011
Location: Wilmington, Delaware, USA
Posts: 6
Getting Close HB User
Re: MS and Vision Loss

Nikki, thank you for taking the time to respond. I have spinal lesions. I have optic neuropothy from ON and I have thinning of the macula (which is the real problem). I am unable to drive at night due to damage to the cones and rods in my retina. My neuroimmunology is a MS specialist. He told me that I am in limbo. My last Brain MRI w/ and w/o contrast was in May 2011. Lately, I have been experiencing muscle weakness in my legs, arms and worst of all is my neck. It is causing fatigue and making life more difficult because I have a demanding job. I am not in a hurry for dx but I am worried about my vision getting worse. Thanks again.

Old 08-26-2011, 06:07 PM   #4
Join Date: Sep 2007
Location: Arizona, USA
Posts: 9,976
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: MS and Vision Loss


Prior to 1982 all MSers were diagnosed without an MRI (pre-MRI years). In Japan until recently most cases of MS started with ON. Most are treated with steroids. The doctors there diagnose ON as a separate disease until a "western" symptom appears and then they diagnose MS officially.

If you want or need a second opinion, I would say "go for it". You have that freedom.

MS can cause temporary or permanent eye damage. I have had light sensitivity in my right eye since 2002. I have lost my vision several times, but I have always come back from it within 3-5 days. Old age and the MS caused light sensitivity are my only lingering vision problems.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Last edited by MSJayhawk; 08-26-2011 at 06:07 PM. Reason: brain hiccup

The Following User Says Thank You to MSJayhawk For This Useful Post:
Getting Close (08-27-2011)
Old 08-26-2011, 06:45 PM   #5
Senior Member
Join Date: May 2011
Location: NY, NY
Posts: 149
KingBaxter HB UserKingBaxter HB UserKingBaxter HB UserKingBaxter HB UserKingBaxter HB User
Re: MS and Vision Loss

Hi GettingClose,

I was diagnosed with possible MS in May after being treated with IV steroids for optic neuritis in my left eye. My vision is really close to normal now, just not quite perfect yet. Approx. 1 month after dianosis and the start of the ON, i started on Rebif at the recommendation of my neuro.

I do have 3 lesions total. My neuro says that 2 of them are very old and inconsistent. The 3rd is newer and consistent with MS.

My vision has continuously improved since i began the iv steroids - at a very, very slow pace. I don't know if the rebif has anything to do with it, because it supposedly doesn't really start to work for 6 months. But I have not had any other problems since the ON (knocking on wood really hard right now!)

I know everyone is different and it's a very personal decision whether or not to start on a DMD, but for me, the choice was easy. Even though i do not have CDMS, and there is a (remote) possibility that i never will, i want to do everything i can as early as i can...

Good luck!

The Following User Says Thank You to KingBaxter For This Useful Post:
Getting Close (08-27-2011)
Old 08-27-2011, 02:35 PM   #6
Join Date: Dec 2008
Posts: 161
hamfrie HB Userhamfrie HB User
Re: MS and Vision Loss

Have you been tested for Devics? aka NMO?

Sorry you are suffering with vision probs. So I am after my recent bout of ON. My eye sight seemed to improve but feels like I am less and less comfortable with seeing but I can't explain why....just feels harder to see

I am on copaxone now (second month) no real change yet but I don't expect any changes with my MS for at least 9 months and even then I hope it will stop more progression as it prob won't help with damage done

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Pink eye and vision loss?????? kimpossible67 Multiple Sclerosis 4 01-24-2011 07:11 PM
vision not coming back after 8 months please help donna23232 Multiple Sclerosis 7 05-08-2009 12:18 PM
MS - vision nessg Multiple Sclerosis 10 07-22-2008 08:25 AM
vision question supernova_krose Multiple Sclerosis 1 02-12-2008 07:22 PM
Vision disturbance. lizziebee74 Multiple Sclerosis 5 01-24-2008 04:59 PM
central vision loss duttin Multiple Sclerosis 4 01-13-2007 02:14 PM
I have blurred vision and the same with reading ? Dolphin43 Multiple Sclerosis 4 12-19-2006 03:37 PM
? for those with vision loss tiresome Multiple Sclerosis 0 10-11-2006 08:02 AM
Vision problems in both eyes? Life4Fun Multiple Sclerosis 9 03-08-2006 06:24 PM
Does MS cause loss of vision in both eyes or just one? Tiffyholman Multiple Sclerosis 9 12-15-2005 10:14 PM

« Day 7 | Relapse??? »
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 04:22 AM.

Site owned and operated by HealthBoards.comô
© 1998-2018 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!