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!
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 neuro...do 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.
Nikki
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RRMS- dx 05
The Following User Says Thank You to MSNik For This Useful Post: Getting Close (08-27-2011)
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.
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.
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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)
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)
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
Welcome.
and the MS caused light sensitivity are my only lingering vision problems. 
