Julie - Yup - your right - percentages definitely go up if there are lesions at the time of the ON. Check out that link above because Doc Q includes some tips on what info to take away from the study. Jess is clear for now, which is a good thing.
Ok, just thinking out loud here but don't a large percentage of ON patients go on to develop MS?
I have MS and never had ON but I seem to remember this being a common first symptom. Not that everyone who gets ON eventually gets MS but a majority do? Not trying to scare Jess,but I think w/ other sx it is very, very important that you (Jess) follow up on getting a dx.
There are lots of tests to run other than brain MRI (which always showed negative for me). Find a good neurologist.
Julie
Not that you have ms, but my sx started as ON and tingling in the hands and feet, which led to my dx. The sx came and went often so nuero said it can't be ms.... hmm, guess she was wrong.
Hi JessG,
Adding on a welcome to you JessG. It's great news that you do not have lesions at the time of your optice neuritis. You should be followed by a neuro though especially because you are symptomatic. You may not have MS, and you may never develop it like was mentioned by Lulu. And, your symtoms may fade.
But, please read this article if you have the chance so you know more about what we are saying.
http://www.medhelp.org/posts/Multiple-Sclerosis/MULTIPLE-SCLEROSIS-RISK-AFTER-OPTIC-NEURITIS/show/664930?personal_page_id=864133
If the doctor did not suggest future follow-ups please move onto another that is willing to keep an eye on you.
Thanks so much for trusting us with what you have going on. Hope we can help with your next steps :)
-Shell
You are in my prayers, Jessica!!! I am traveling a similar path of figuring out WHAT is going on. Do not give up, you will find an answer. :)
You need neurologist. I can't believe it was suggested by the opthalmologist that you didn't. I would see a neurologist that specializes in MS- an MS specialist. He/she will run tests to determine what it is that has caused your neurological symptoms and ON.
Lupus and a few other diseases can cause ON, too. A spinal tap may be helpful to determine if you have an infection, MS, lupus, etc. Sometimes they are negative and it doesn't mean anything. Some people have negative LP's and still have MS. However, if something is found, sometimes it gives a very good clue as to what's going on.
Plus, you really do need a spinal MRI--especially the cervical one. Many people also have had lesions show up on their T-spine. Hopefully, your brain MRI was done on a closxe machine that was at least 1.5T with MS protocol. My first brain MRI was negative because MS protocol wasn't used on a weak open MRI machine (doctor was looking for brain tumors).
Hi LuLu,
Thanks for responding to my post, I really appreciate it. Yes you are right it could be something else rather than MS. The only reason why my research has led me to think MS it's because of the ON.
I hope that the months do go by fast, since I want answers to my problems but also because I've never really been a fan of the heat during the summer .. it gets too HOT.
Once again thanks so much for your help and I also hope your doing well =)
....... So how did I do this time with the breaking down the paragraph? haha I'm sorry I really didn't think of that and being that I'm partially blind myself I should of known better but I have learned fast =)
P.S. I have one last question and this is regarding a Spinal Tap? Would you recommend it? I've heard of people having problems and after effects after having it done. I don't know if you would be able to answer this. Thanks.
Yes I'm showing neurological symptoms on top of the ON as well which has got me worried. I didn't know that migraines could cause tingling and numbness, thanks, I will search that up.
I also didn't know that MS presented itself on maybe just one side of the body. I'm sure that it could be possibly show on both sides as well. Did your MS presented itself as back pain? What were the exact symptoms of yours before you got diagnosed, if you don't mind me asking?
Wow, you have seen a total of 10 doctors? But I totally understand you. I sometimes fee that some Doctors are just their to get their paychecks and they don't care what their patients are going through. It is really hard finding a good. I won't give up until I find answers, Thanks so much =)
The difference is the resolution is stronger on the 3tMRI. The spine is a tiny space to be searching for lesions. Doesn't it make sense that a stronger machine would find them easier? Most on this board will disagree with me but I was one that was missed..Luckily my second neuro is a smart woman and MS specialist. I knew the following day it was MS and began treatment.
Hi Sumana,
I have not gotten a spinal MRI. Is there a difference between a 3t and 1.5 MRI? Thanks for the advice. I had not thought about a spinal MRI but I will bring it up to my Doctor/Neurologist.
I hope you are doing well. God bless =)
From what I read, you are not saying you only have ON but are showing other neurological signs...tingling, spasms and the doctor prescribed migraine meds for you. I do know migraines can cause tingling and numbness...There was a recent clip of it happening "on air" to a news reporter. Your head doesn't have to be pounding to have a migraine.
MS does not usually present in both arms and legs at once. However, MS also doesn't present as back pain only like mine did....at least it was the only symptom that interfered with my life.
So having said all this. If it is migraine ya need a neuro. If there is a possibility of MS ya need a neuro. If it ain't either try another neuro. I guess when I exhausted that I would go back to my PCP and let him guess. I sure wouldn't stop the battle. I had probably ten doctors before I gave in and gave up. Don't be foolish. A lot of damage can be done to your body.
Hi Jessica and welcome.
We know that people who prresent with a case of optic neuritis have an increased chance of progressing into multiple sclerosis in the future. But that is not a 100% guarantee. It is also possible you will have no more problems.
The symptoms you mention could be MS, but they could also be from many other things. I'm glad to hear that your migraines are under control.
August will be here before you know it and hopefully the neuroopthamologist will have more answers for you.
in the meantime feel free to come back and ask all the questions you might want answered . We'll try to help.
best, Lulu
ps - if you can break up your posts into smaller blocks of text it would be helpful. Many people here have vision problems and the large chunks of words are impossible to read..
jessg, you don't say if you were given a spinal MRI??? If not, I would recommend asking for one on a 3tMRI. All of us have our own experiences here. Mine was a 1.5MRI did not show the lesions on my spine. As I sat not knowing that was even possible, I lost a lot of my strength. Maybe there are only a dozen of us that don't show lesions on a 1.5. Don't be one of them.