[legzzalot]

So the nurse called Friday to tell me she got the results from MRI #1 and expects to have #2 back Monday (today). So I call this morning to schedule the follow up so we can go over the results and start the new treatment since the steroids only seemed to aggrivate all of SX and make them worse.

My nurse, the only one I have spoken to at the new neuro is of course off today. Not a big deal, i can schedule the follow up with the lady that answers the phone. And she tells me I can't come in until April 14th!

Are you kidding me?? Both of my eyes are acting up and I am numb from the waist down i cannot drive and I am miserable I was rushed to do the stupid MRIs which I didn't want to do to begin with and now I have to wait 3 weeks???

[Erin524]

That's how it works sometimes.

When I had optic neuritis back in 2006, I got to see a brand new eye doctor the same day that I saw my regular doctor (eye went weird on a friday/saturday night, went to the ER, they sent me home, went to regular doctor first thing on a monday morning), but when he and the then-brand new neurologist both referred me to a neuro-ophthomologist I had to wait until NOVEMBER 20th! (optic neuritis hit me in August!) And that guy tried to tell me that it was caused by a migraine! (well, that's what my neuro told me in August, but that's just because I didnt have another exacerbation till december that proved it wasnt migraines causing my problems)

Of course, in my case, the reason that I had to wait was because there's only one neuro-ophthalmologist in the entire state of Nebraska. (and none in Iowa that I know of, otherwise I'd have gone there)


I know that you feel like it's an emergency, but the neuro's office might not. Most neuro's dont feel that sensory symptoms (numbness) are an emergency and the optic neuritis will heal on it's own most of the time whether or not you have steroids.

I know everytime I've had a new funky symptom, I always feel like it's an emergency, even tho it's probably not. I do tend to treat vision disturbances as emergencies whenever I have them...I've calmed down about new instances of numbness tho. (I hate numbness with a serious passion tho)



Maybe you can tell them that if anyone cancels their neuro appointment within the next few weeks before yours comes, you'll take their appointment time?

[kicker]

An opthalmologist I'sdgone to and I were talking. She said Neuros were the worst of doctors for keeping removed from patient and having no bed-side manner. A nurse told me the Neuro I was about to see was great, but had no bedside manner. But I loved him. I find MS clinics neuros great, regular neuro. DXed me and I hated his manner.

[legzzalot]

The good news is the nurses are very good at returning your phone calls. I spoke to a new nurse who pulled my file and went over it. I explained to her the issues I have had since doing the IVSM. I also explained to her that it is now effecting my daily life, I mean i can't see to drive, my balance is off, and I feel like there is a knife stiking out of my spine. The numbness I can live with. the lightening bolts down my back I can deal with. She told me she will contact the neuro on duty and have him call me and see what we can do about the rest. So now I wait.

Mom just got here about to go to the hospital an pick up my MRI results.

[greta]

I'm guessing she's an equal opportunity hater I bet most people have the same experience!

[hollym]

April 14th are you kidding me?? I would kill for that!!

My MS specialist wanted me to have an April appt back in October when he saw me. He told me to schedule for 6 and 12 months from then. The appt booking lady said "sorry he is full until mid-June. So, I got appts for June and December. Then, I got a letter in the mail saying he isn't going to be available for the June appt, so now I am scheduled for August. Then, I got another letter saying he isn't available for the December appt either and now that one is in January.

He is a good neuro, so he is always way booked up, but this is a little ridiculous. I seriously think they have an asterisk next to my name saying to bump me because it happened twice last year, too.

[legzzalot]

yeah see that doesn't fly with me. Apparently VA is the land of neuros. There's one on every corner. Finding the good ones is the hard part. Oh, but try finding an eye doctor for the ON.... I found one....in richmond (45 miles away) who can see me in Sept!

[hollym]

Yeah, it is the part about finding a good neuro. The good ones are always more booked up and sometimes you have to put up with it. Is this something you can handle over the phone with the neuro? That is sometimes easier if it isn't something that requires an exam. I would just ask if the neuro can call you back to review the MRI and proceed with setting up some treatment.

You can probably also ask to be put on a cancellation list, but you would have to be available quickly for an appt if someone cancels. Usually, you get only a day's notice at most for a cancellation appt.