Scared and need to ask a question Please

Hi, I am a 43 year old female with vision problems for a year now. My eye doctor says that my optic nerve has been inflammed and now is worse.He told me he is thinking MS.  He is sending me to a neuro-opth doc. He ordered a MRI and I dont know the results yet, but last year he said it was fine for tumors. My question is what are all the test for clearly ruling this in or out? I had two back surgeries in 2005 which left me with terrible sciatic nerve pain. I have other problems with stiffiness in my joints and muscles that get sore for no reason. Since back surgery, I have been different, so how hard is it going to be to test me, when all this is going on? From what I have read, it is clearly hard to diagnosis especially if the MRI is neg. What will the neuro-opth doc do to find out? I am so afraid at this point, because I have alot of other health problems and I cant imagine having this on top, but as I read, I am not the only one.
Thanks for any responses
Becky

[essdipity]

Hi and welcome. You are far from the only one.

I think I sense that you're beginning to panic. Please don't. Even if you have MS, and we're far from knowing that, you can live a good and full life. The big majority of us here manage to do that.

I urge you to read our Health Pages (see icon at upper right). A great many of your questions will be answered that way. You need a lot of tests, including a lot of rule-outs, since MS has many symptoms in common with other things neurological.

The neuro-ophth person can carry things only so far. If he decides you have optic neuritis, make sure he refers you to a good MS specialist.

Let us know how things go.

ess

[Becky559]

Hi, Thanks and yes I have felt a bit panicky this last week. Just the unknown is sometimes worse than the knowing. I just want to be educated about this issue before I go to my appt. on June 1st. I have read alot here and the movie on utube was good. So, maybe I will know more after she reads the MRI and looks at my optic nerve.
Any other advice, send it to me.
Thanks,
Becky

[Erin0313]

Becky,

  Hi. Your said that you have been having vision problems for a year now. Has it been non stop or off and on? Have you had pain? If yes, what kind? Color blindness?

Sorry for all of the questions. We aren't doctors but answer by our own experience and that of friends so the more info the better the answer.

It might be a good idea to go online and research Optic Neuritis before your visit. I have had it twice so far this year - that's why all of the questions. If you look it up you may be able to compare your own experience this past year with the symptoms of ON and see if you think it is a good fit.

Good luck & keep us posted.

Erin :)

[Becky559]

Hi,
It started a year ago. I notice my close up vision was blurred and I was having alot of twitching around my eye so I went and had eye exam and got glasses which helped. I figured it was due to aging. Then the eye doc said that my optic nerve on the left was inflammed and I needed to see my reg. doc. He did nothing and I went to our Medical eye doc and he said that it was inflammed and ordered a MRI and a bunch of vision test. All were Ok, until now,(six months later) and the vision test all came back abornmal and I am waiting on the MRI results. He referred me to a neuro-opth doc June 1st in Atlanta for her dx. This time, the second time, has been worse, because even with my glasses, it is blurring. This time it is my Right eye. I dont have color problems that I know of and I really cant call it pain. I do feel like it is bruised behind my eye with movement, still not bad. And with all the pain I have already, it will be hard to dx me, or at least I am thinking it will be. I have had alot of problems with my lower back, which resulted in two surgeries and need a third. My left leg hurts all the time because the disc are on it. I also have arthritis seems like everywhere and my joints, muscles, hurt alot. My left shoulder has nerve impingement with spurs. It hurts from my face to my hand, with tingling and throbbing pain.
So, does any of this sound familiar to your eye episodes? The first thing my doc told me it could be was MS so that is why I am trying to educate myself about it. Thank for responding and let me know about your MS.
Thanks,
Becky

[Erin0313]

Becky,

  The inflammation of the optic nerve sounds like Optic Neuritis. It is also a symptom of   MS. Not all MS'ers get ON but for a lot of people it is the first "flair".

  It is unusual to get it in both eyes but some people do (I did). One eye is way worse but both suffered.

You may have color issues and haven't noticed. Close one eye and look at something colored (red is best) and then change eyes and see if one eye looks brighter.

There are a lot of MS mimics out there so it is important for both you and your doctors to rule those out. One that involves the eyes is called Devic's Syndrome if you want to check that out.

I hope that you get the answers that you are looking for. Pain and suffering ***** but not knowing what's going on (what you have) makes everything so much worse. Hang in there. There are lots of great people that will help you while you go through this. You are not alone.

Erin :)

[Becky559]

Thank so much and I will be in touch once I see the neuro-oph. I did the color test and there is no difference. If you have time, tell me about your MS and and about how your eyes done.And how they finally dx you.
Thanks for the support
Becky

[Becky559]

I have some good news, but still waiting on the specialist test. My MRI was negative for optic neuritis and all was normal. So, this is good news. I quess I will know more June 1st. Thanks, Becky

[sllowe]

Hi Becky,

Adding on a belated welcome.  I'm sending you this link because it includes the risk of developing MS with ON and brain lesions. I'm glad to see your MRI was negative. June 1st is right around the corner!

http://www.medhelp.org/posts/Multiple-Sclerosis/MULTIPLE-SCLEROSIS-RISK-AFTER-OPTIC-NEURITIS/show/664930

Is this specialist a neuro?

Thanks for joining us,
Shell

[Becky559]

Hi,
I am having another bout of this blurred vision. I knew it before I even tested my eyes because I could not see the regular font on this site as I could yesterday. Not even with my glasses.  I do feel a soreness behind the right eye and it is this eye that is blurred. The MRI  is Negative for neuritis and no lesions, but eye doc says he sees inflammation. I dont know what to think. Will see the neuro opth Monday. Maybe she will know more. What do you all think? MRI was done at 1 and 2. I noticed someone said it should be on a 3 machine. Any ideas?
Thanks,
Becky

[Erin0313]

Becky,

  Not again! You poor thing. The fact that it isn't going away makes me believe that you need steroids or something to help it. I know that June 1st is right around the corner but I think you should call your neurologist and let them know whats going on.

They might want to see you or they might want to put you on IV steroids to bring the inflammation down. If they do choose to go the steroid route, you could have 3 or 4 days of treatment in before your appointment.

When you call let them know that the eye doctor saw inflammation and you were wondering if something can or should be done today.

Make the call please & keep us posted

Erin :)

[Amyloo]

Hi Becky,  I just wanted to add my support; waiting for help is no fun.  There are so many people here with great compassion and advice.  Hope things go well for you.  God bless you, Amy

[michelleric]

Hi Becky,

I have had 2 bouts with Optic Neuritis. I would also recommend calling the neurologist and see if they can move up your appt. Also, have you seen a neuro-ophthalmologist. That would be most helpful too.

Michelle

[Quixotic1]

Hi, and a belated welcome to the forum.  I've been reading about your problems and a, too, am sorry you have to go through all of this.

I have to comment on the MRI and optic neuritis.  A negative MRI DOES NOT rule out optic neuritis.  If you are having symptoms of optic neuritis and your otpic disc is inflamed, then that is far more compelling evidence.  An MRI does not always show the damage in MS.  Too many neurologists believe that it does and that hurts people trying to get diagnosed.

I also want you to see the neuro-ophthalmologist.

When you say the MRI was done at 1 and 2 I think you were misunderstanding the report.  It is VERY confusing.  The two main techniques used in an MRI are T1 and T2 "weighting."  The strength of the machines is indicated by the number (0.7, 1, 1.5, 3, etc) BEFORE the letter T.  So you will see the T1 or T2 in the report, but the strength of the machine is found elsewhere.  the easiest way to find out is to call the place you had the test done.

I'll be back with the specific info about how often the MRI really does show a lesion in otpic neuritis.

The neuro-ophtho may want to run a test called a VEP, Visual Evoked Potential, if she agrees that your symptoms are suggestive or that the disc looks inflamed.  Another test tehy frequently do is one to check for the peripheral vision, called a Visual Fields Test.

Quix

[Quixotic1]

Well, I overspoke.  In someone with optic neuritis the MRI is usually positive IF it is done under special conditions to specially visualize the optic nerve.   This conditions are special techniques (like fat-suppression or short tau inversion recovery for those that were wondering)  and extremely thin slices of 2-3 mm.  And optic neuritis is mostly a clinical diagnosis based on symptoms and testing.

As far as whether a person with optic neuritis will have MS, it is kind of a discussion about risk.  If you have optic neuritis and you have a completely negative brain MRI, your chances of developing MS within the next decade or so is about 22%.  If you have 1 or more brain lesions (which are suggestive of the lesions of MS) then your chance of developing MS within the next decade or so is closer to 56%.

You are correct that having a large amount of damage in the spine from trauma or arthritis does make it harder to diagnose MS, but it is not impossible.  Sometimes we never know if a particular pain or paresthesia is from MS or from spinal issues.

I know you are very worried.  Remember that a diagnosis of MS is not a death sentence. Only about a quarter of people with MS will end up in a wheelchair 20 years after diagnosis.  Most people continue living their usual lives with bumps and interruptions.  It's the minority that have a really rough time.  Stay with us as you go through your work up and we'll help answer the questions and keep you sane.

Quix

[Becky559]

Hi,  Thanks for the information. I see on the MRI where it says T1 and T2. I will call and find out about the machine. I understand that more now. I hate to hear that inf. on the ON showing on the MRI. Why do they even bother to say there is no optic neuritis? Oh well, I quess like you all say, see the neuro-ophthalmologist doc on Monday. My regular eye doctor said that my visual test were abnormal. I remember the word visual field test being mentioned and that what was not normal. I hope this doctor is good and can dx me with the right thing since it is so important in early tmt. I will be interested in seeing the specifics on the MRI and lesion in ON. You all have more inf. than the regular doctor could give me. He also mention Drusen???? and MS and said these were his two quesses. I figure that is why he is sending me to a neuro ophthalmologist. Should I ask for specifics when I go? and if yes, what do you recommend Quix? Thanks, Becky

[Becky559]

Hi, I just read your last message and thats fine about information. You have been very helpful as I have been reading alot of your post for some time now. Well, since Oct.08 off and on because I really didnt know what to say. I noticed on my MRI last year that was done on my cervical, thoraic, and lumber they keep saying narrowning of the canal and it is at the upper limits of normal. No one ever said anything about that being a problem so I just ignored it. I realize that it would not be the end of the world for a dx of MS. I have worked through way too much muddle to hang it up for it. Sometimes I wonder if some of my nerve problems(spine) are from MS? And also a dx of depression which comes and goes. Some days are hard to even get up, but we do and life goes on. I quess I am not that path to find out. Thank again, Becky

[Quixotic1]

I still believe the symptoms and the exam over the MRI.  We have seen the MRI be wrong too often here to worship it.  Your question is valid.  Why do they say on the report that there is no optic neuritis just becasue it didn't show on the MRI?  We also do not know whether the proper techniques were used and how strong the machine was.  If you have the symptoms of ON and the disc is inflamed - then you have ON - period.

Thank you, I always pray that something I write will help people - and I sometimes imagine that there are lots of people we don't know about reading and learning from this forum.  :))

Quix

[Becky559]

Just wanted to let you know something, which you are going to believe!!!!!!!!!!
I called the neuro-ophth to let them know that my MRI was done with a 1.5 machine and ask them if that was satificatory to them. Well, she, the nurse was insulted that I knew even this much and ask me how I knew this and why. I told her I had being trying to educate myself about MS and ON and had read that on the 1.5 some things didnt show as well as the 3 or 7. This is my first visit and it is a long drive that I didnt want to make once for her to tell me to get another MRI and wait and come back again, and so on. I ask if they had patients do MRI on stronger machine where they are located and she said that I didnt need to educate myself, that the doctor would do this. And I didnt need to self dx myself. Well, I told her that I wasnt self dx ing myself, but since this was what my ophthamologist thought I had, that I wanted them to have the right test either before I get there or at least be able to do it while I am there. She said to stay off the internet and the doctor would handle this. I already am MAD because they are already not listening. What do you think about this?  VENT<VENT  Thanks, Becky

[Fluffysmom]

I think that the nurse was incredibly rude.

Health care professionals need to become aware of the fact that more and more people are becoming active participants in their healthcare.  It is important for us to become educated, as too much precious time is wasted in trying to find a diagnosis.

It is not you trying to self-diagnose; it is you listening to your opththalmologist said, then reading readily available information that shows that on average the 3T machines show 25% more lesions than a 1.5 machine.

It is listening to your friend who's a doctor (Quix),  She has said that the exam and symptoms are more important than the MRI, and for the MRI to show evidence of ON, it needs to be done in a particular way, as well as having the stronger machine.

I believe that we have a right to be involved in our healthcare decisions. Unfortunately, not all doctors agree with this.  Sometimes it is just a nurse or scheduler that is trying to feel powerful; I had a big mess with my first opthalmologist's assistant, who felt she could make decisions for him. It turned out that he couldn't communicate well anyway, so I moved on to a neuro-opthalmologist that did further testing and took a better look at everything, and was very good at communicating.

So, you can talk to the neuro-optho on Monday and calmly discuss your concerns.  Share what you learned from your friend who's a doctor (don't tell that you met her online!), and share your desire to know all that you can about what is going on with your body.

You deserved a good vent!

Wishing you the best,

Kathy

[Quixotic1]

None of us need to accept the old paternalistic attitude of, "You don't worry your sweet little head, honey.  Let me tell you what to do, think and believe."

She was echoing the arrogance of the office she works in.  Yes, it was rude.  I suspect she doesn't know anything at all about the stregth of MRI machines.  Be aware that this is the attitude of the neuro that you are seeing.  You may need to seek care elsewhere if they continue to be uneducated and arrogant.

For the record, I do not know that the 3T is better than the 1.5T for visualizing optic nerve lesions.  I have not seen this in a study.  

Becky, your rant is justified.  But, be careful about thinking you are going to re-educate them.  Kathy has tried this and ended up in a race to see who could discharge whom first.

Quix

[Becky559]

Hi, good morning to you all! Thanks for letting me vent. I just couldnt believe that she was so bossy and was ugly to me for looking up what was suspected. Well, this is my first visit with this office on Monday. I will go with an open mind, but some what educated also. I am normally very easy to get along with, but my vision is at hand and I hope this is a good doctor. I can take bad bed side manner to a certain level if she is a good doctor. Thanks again, Becky