I need some advice =)

Hello Everyone,

My name is Jessica, and where should I begin. About a month ago May 21st to be exact I lost partial vision to my left eye my vision looked like it was scotoma with a very big blind spot in my central vision. I didn't know what to do so I went to get checked by a Optometrist she checked my eyes out and said that they looked fine and referred me to a Ophthalmologist to get a more thorough check. So I went to visit the Ophthalmologist about 3 days after she had referred me and he said that it looked like I had mild optic neuritis and ended up ordering me an MRI and to undergo a 3 day IV solu-medrol <--- sorry if thats not the correct spelling and told me there is a possibility of MS. After the second day of the IV medication I began to feel pain on my legs and a throbbing headache and facial pain that also included pain on both my eyes. I just thought it was a side effect of the solu-medral. The pain went away 3 days later. I had the MRI and wasn't able to get the results until 3 days after.A couple days later I had another appointment with the Ophthalmologist again to see if the IV worked and he said that the nerve looked good and that the MRI turned out normal and that I didn't need to see the Neurologist anymore. I ended up seeing the Neurologist anyway to see what she would say, and she told me that the MRI looked good and normal and proceeded to do some reflex tests on me like (touching my  finger to my nose, pressing down on her arms, walking on my tippy toes, etc.) and she said that it all looked good. She then ordered a blood test to see if I had diabetes, but that also came out normal. At this time the only thing bothering me was the loss of vision, and the constant headaches. So she prescribed migraine medications which did ended up working because as of right now I don't have any headaches. Now, three days ago I started getting tingling in my hand and feet that are still persistent and have also started getting the leg pain and muscle spasms. I also saw the ophthalmologist again because have been seeing floaters on my right eye this time, but he cheked me and said that my eyes looked perfect and that I should go to my family physician because he thinks it might be something else. One last thing, I managed to get an appointment with a neuro-ophthalmologist but he won't be able to see me until August because it seems like he is the only one that my insurance provides in all Southern California. I know that these are all symptoms of MS and was wondering what other kinds of tests should I be getting tested for I feel a little lost right now since it's all happening so sudden. Prior to losing my vision I was perfectly fine and never had experienced anything like these before. Sorry my post is a long one. Any advice/ help will be appreciated. Hope everyone is doing well and thanks ahead of time =)

[Sumanadevii]

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.

[Lulu54]

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..

[Sumanadevii]

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.

[jessg05]

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 =)

[Sumanadevii]

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.

[jessg05]

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 =)

[jessg05]

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.

[Deb61]

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).  

[lateeda]

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.  :)  

[sllowe]

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 (symptoms) 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

[nate79]

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.

[jujuminx]

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

[sllowe]

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.