What to expect...

[justy34]

I have my first Neuro-Op appt. on the 8th of November, and i'm trying to get mentally prepared for it.

This will be my first appt with a neuro of any sort. It has taken me a little while to get the Dr's to take anything i say seriously, or at least that's how it felt. Truth be told, it is probably more that i don't have insurance, and have financial assistance through the local hospital. If i had private insurance, they probably would have sent me for these tests sooner.

They sent me to the Opthalmologist 3 weeks ago, and they found that my optic nerve was swelling, so they have referred me to the Neuro-OP in my area to further evaluate. They mentioned that i'd most likely get a MRI and a LP, but other than that i just don't know what to expect.

Does anyone have any advice on what to ask, say, etc to the Neuro, or can anyone give a newbie some pointers on what to expect?

Thanks so much,
Justy.

[Shiela]

What a great question! Wish I had asked the same question before I saw my neuro. Here are some suggestions. I'm sure others have valuable suggestions as well.

1) What tests do you plan on doing? What is involved in these tests?
2) What are the significance of these tests?
3) How many MS patients have you diagnosed?
4) What conditions do these test rule out/in?
5) Find out the name of the medical assistant. She will be your mainstay of communication between you and the doctor at times other than appointments. Make friends with her.
6) Mine likes me to bring MRI imaging disks to him. For some reason he has a hard time bringing the files up on the computer. You might bring them and keep them handy. If he looks at them in your presence, it also might help you to find out if he can actually read them or is relying on the interpretation of the radiologist report.
7) Does it look like the problems I am having may stem from central or peripheral problems or both? What does that tell you?

Hope things go well for you.

[mjan]

Gosh how I feel for you and others who do not have insurance. I pay COBRA and it eats up my little income, yet I feel lucky.

I keep logs documents on computer. Bring list of meds, allergies to meds, etc, brief medical history and list of symptoms, duration of such symptoms in bullet points. Make sure it thorough but not lengthy. Make sure you make bullet points of NEURO type symptoms. Look up MS symptoms and list if you had/have them.

Next he'll do a clinical exam and with an MRI see where you're at MS wise. Did you know that the MS society has a fund for MRIs for those w/o insurance?

Good luck.. it will be ok..hang here with us. You are not alone with all this, tho challenging WE'll get your through it along with lots of support.

Do you have outside support ?

Hugs, Jan

[justy34]

Thank you Sheila and Mjan for the great suggestions. I have written down both of your suggestions. I have managed to keep a log of my symptoms over the past few months. However, it is a bit lengthy.

I have seen where some people say to only concentrate on your neuro symptoms and save the other small symptoms for a later visit. That way the neuro doesn't get lost in the long list.

Mjan:
I didn't realize the MS society had a fund for us uninsured, that is good to know. However, i'm still in limbo-land and i don't know if it would apply to me at the present moment.

I do have some support at the present moment. I moved home to Michigan 4 years ago from Arkansas after my mom severely injured her back. I helped nurse her back to health. She is doing well now, looks like it is her turn to support me once again.

Sheila:
Thank you for suggesting to get the name of the Medical Assistant, i wouldn't have thought of that. I can definitely see how that would help though, just getting information from my previous bloodwork and other info from my PCP has proved to be tiresome. So i can imagine if you don't have a go to person at your neuro's office it could be the same.

With all the emotions, symptoms and everything else that goes along with my health, i was afraid i might forget some crucial questions i should ask.

Thanks again to both of you. It is crazy, i'm nervous and excited at the same time to finally be seeing a Neuro. Nervous of what the outcome might be, but excited to find out that i'm not crazy as well, if that make sense. It will be nice to hopefully get some answers in the near future, rather than feeling like a hypochondriac.

[mjan]

Hon, look up MSAA as they have a list of things that they offer complimentary and I know MRIs are one of them, esp for Diagnosis.

Good luck, Hugs, Jan

[Redwings]

Hi Justy:
You said you're going to a "Neuro-Op." By that, I'm assuming that you're going to a neuro-ophthalmologist. My reply is based on you going to a neuro-ophth, not a neurologist.

Not knowing the particulars of your situation, it's hard to say exactly what to expect. But it's reasonable to expect that, since you're going to a neuro-ophth because of a "swollen optic nerve," the tests will be ophthalmology tests. In that respect, you can relax. You've been to a general ophthalmologist, so you're already familiar with some of the standard optometric and ophthalmologic eye tests and some of the instruments the doctor's going to use.

Some of the tests you had before might be repeated, and some might be replaced with new tests. Exactly what's done will depend on the particulars of your own situation, so it's not possible to know exactly what those tests will be. Generally speaking, it's standard procedure for your pupils to be dilated and tests done that evaluate your physical eye status (where the doctor looks at and into your eyes with various instruments) and visual function. If you did a visual field test at the ophthalmologist, the neuro-ophth might or might not have you repeat it.

It's important that you not try to anticipate everything that's going to happen because, if something you were expecting doesn't happen, or if something you weren't expecting does happen, it might confuse you unnecessarily.

As far as questions to ask, it's important to remember that it's your doctor's job to examine you and devise a diagnosis and management plan. It's not your doctor's job to explain every detail of what's done and why. (In other words, it's your doctor's job to do his/her job, not to teach you how or why s/he does it.)

It is your doctor's job to explain the diagnosis and management plan. So appropriate questions for you to ask are: What did you find? What does it mean? What about the things you found tells you that it's condition X and not something else? What am I supposed to do about it? How do the things you found fit in with my workup for MS? What am I supposed to do next? When do you want to see me again?

One of the things to do before your neuro-ophth exam is to find out whether your neuro-ophth is an ophthalmologist who specializes in the neuro aspects of ophthalmology, or if your neuro-ophth is a neurologist who also does ophthalmology. In my experience, a neurologist who also does ophthalmology is overextending him/herself. There's far too much to know for one doctor to know enough about both fields to do the best job for a variety of patients. If at all possible, it's better for the patient to have a separate neurologist and neuro-ophthalmologist.

What you should expect depends on the doctor you're going to see. If you're seeing a neuro-ophth who's an ophthalmologist, you're going to be very disappointed if you're expecting to see a general neurologist.

My own neuro-ophths have been brilliant, and I'm sure that's because they don't try to do things outside the scope of their own specialty. They're not neurologists. Your neuro-ophth might not be a neurologist, either. So your neuro-ophth might or might not be the one to order your MRIs and LP. Without knowing the specifics of your situation, it isn't possible to predict. So I think you should be prepared for either possibility.

[justy34]

One of the things to do before your neuro-ophth exam is to find out whether your neuro-ophth is an ophthalmologist who specializes in the neuro aspects of ophthalmology, or if your neuro-ophth is a neurologist who also does ophthalmology. In my experience, a neurologist who also does ophthalmology is overextending him/herself. There's far too much to know for one doctor to know enough about both fields to do the best job for a variety of patients. If at all possible, it's better for the patient to have a separate neurologist and neuro-ophthalmologist.

Hi Redwings,

Again, i appreciate your in depth response, you always do such a nice job on your answers and helping others.

As far as my Neuro-Op, the way i understood it from my normal Opthalmologist was that he is a Neurologist who specializes in Opthalmology. I know when i visited his page on the hospital site, it says he specializes in MS. I agree with you when you say it would be hard to know enough about both fields to perform well. Sadly, with lack of insurance, i have to take what i can get so to speak.

My regular Opthalmologist also stated when she referred me to him that i would most likely have a MRI and LP after seeing the Neuro-OP. Although, i'm not completely sure whether he will order it, or if my PCP, or regular Opth. will. I suspect it won't be my PCP since he doesn't seem too concerned about much of anything. Getting a hold of him is like pulling teeth. lol

I guess i'll just have to let the curiosity get the best of me until the 8th of November. I may or may not get some answers, but hopefully it will keep me on the path towards diagnosis of whatever is going on with me.

[Just a small town girl]

This is exactly how I first got diagnosed. My eye doctor sent me to a neuro-opthamologist after she could not figure out what was going on with me.

My neuro-opthamologist ran very basic tests on me (light swing, color vision, field vision, etc.) and within 5 minutes or so diagnosed me with a case of optic neuritis. Since I was in my mid 20s and it's optic neuritis, he sent me off for an MRI to rule out MS.

When the MRI results came back with Dawson's Fingers (virtually confirming MS), he sent me off to a neurologist but continued to treat me for the optic neuritis.

If you find a great neuro-opthamologist, they're a great tool to have in your treatment later on down the line. You can see your neuro for everything else and your neuro-opth for your eye related conditions.

I hope that everything goes well for you. I'd expect some standard eye tests on this visit (swing test - just swinging a bright light from eye to eye, color vision test - the book with different colored bubbles forming numbers and shapes, field vision test - picking up blurs or straight lines depending on what model the office has, etc.). Depending on the results your neuro-opth may send you out for some additional testing.

Keep us posted. We'll be thinking about you.

[dpmich]

When I had my debut into MS it was through a bout of ON. I went to a reg eye doctor, he spent a great deal of time and concern with me. When it got to me saying "ow" he stopped testing and made an appointment for me the next day with a Neuro-op.

The Neuro-op tested the eye and optic nerve things he could in office, then scheduled me for an Mri (all 3 with and w/o contrast), spinal tap, an EVP. Then he scheduled me an appointment with an MS Neuro. While the neuro-op was great and did all those things, he wasn't the one that diagnosed me fully. He told me he was "pretty positive" that I had it but that I needed a specialized MS Doctor for dx and regular ms care.

I don't know how your Neuro will be, but at least you know to expect the unexpected now! Just keep hanging tough, they will help get you through all of this. And you have the benefit of having the entire MSWorld family at your fingertips!

Debbie

[justy34]

Thank you both for your replies.

Just a small town girl:
The tests you listed, i am familiar with, i had them when i went to my regular Opthalmologist. I am not sure how the swing test and color test results were.

However, i do know when they did the visual field test, they ended up bringing in about 4 different people to check my optic nerve after it. My opthalmologist said there were some major discrepancies on it. She made it sound like i failed it miserably. She mentioned something about my peripheral field was completely non-existent.

Dpmich: I too am expecting to be sent for an MRI and LP eventually, since my Opthalmologist has already said i would have to. I know they also want to rule out Intracranial hypertension as well, since my optic disc seemed a bit swollen as well. It is quite possible that IH is what has been causing these symptoms too.

IH can cause the gait, vision problems, neck spasms, back spasms, etc, but it doesn't usually cause the tingling in the feet and hands, which i tend to have on almost a regular basis on my right side. My vitamin D levels are low however, and it could be causing the tingling. However, from what i understand, Vit D levels usually aren't low unless there is some underlying disease process going on. So it should be interesting to see how this all pans out.

I have always, since a small child had migraines, so the Opthalmologist thinks its very possible i might have IH on top of things. She thinks i might have had it since i was a small child. It is interesting though, because about 18 years ago when i was around 15, i had a LP to diagnose Meningitis. It seems like if i had IH since a small child, they would have seen the increased pressure then.

I am ready to expect the unexpected.