Confused - any insight is appreciated!!

[Confused16]

I am new here but am trying to find answers for my daughter. Around Christmas time this year she was hospitalized because of optic neuritis that wasn't responding to the oral Prednisone. They gave her high IV doses of prednisone but numbness and pain spread through her face. She had an MRI without contrast that was fine. They also did a spinal tap which was also fine. They gave her IV IG and all her symptoms cleared up within a few days and was tapered off of prednisone. 2 weeks later the numbness in her face came back and now spread to her hands and arms with much pain. The optic neuritis did not return. She is now on Gabepentin which has helped the numbness and lessened the pain. the neurologist thinks it will all go away. I hope and pray this is the case but the worry is in the back of my head that it is MS. I am just confused why it spread so widespread?!? Thanks so much for your time!!

[Snoopy]

Hi Confused,

A mistake the treating doctor made --- Optic Neuritis should never be treated with oral Prednisone. The correct treatment for ON is IVSM (high dose IV steroids).

If your daughter's Neurologist is the same doctor who prescribed oral prednisone for her Optic Neuritis she needs a new Neurologist.

Before the steroids was her only symptom Optic Neuritis?

[Confused16]

Yes her first symptoms were optic neuritis.

[Erin524]

Get her a new neurologist, and probably find her a neuro-ophthalmologist for treating any vision related flares. Like it was said before, oral pred is NOT the treatment for optic neuritis.

I have a neuro for general MS stuff. An ophthalmologist for vision stuff, a physiatrist for when I have flares that cause me problems with getting around, and then my regular doctor for the more normal every day things that have nothing to do with the MS.

Why did they do the MRI without contrast?

[Confused16]

They said they might when we got there if the radiologist felt it was necessary. I guess he didn't?!? Does that make a difference? Why is prednisone not recommended? If this was your daughter would you be concerned it may be MS? I feel so lost with it all!! And when she was hospitalized for the optic neuritis, because she was so fatigued and slept so much the pediatricians starting asking if she was stressed because she shouldn't feel this bad.

[Erin524]

Pediatricians? Wait? How old is she? (I've been reading about pediatric MS)

The reason that you dont give ORAL prednisone with optic neuritis is because they did a study years ago to see which worked better for treating ON (optic neuritis), oral or IV pred. It's called the Optic Neuritis Treatment Trial.

The study found that people who got oral prednisone tend to have more relapses of optic neuritis than people who who treated with IVSM (IV solumedrol, another form of prednisone) or for people who just waited out the symptoms of the optic neuritis without treatment.

Because of the chance of getting relapses of the ON if you take oral prednisone, that's why doctors tend to prefer to give IVSM, or just wait it out and let the ON resolve naturally. (which it can do. First time I had ON, I waited it out...took about a year, maybe a year and a half for me to recover from that. I'm back to about 95% or better. I can see colors again! yay!)

How bad was her optic neuritis? Was it both eyes, or just one? How much of her vision was affected? Was her color vision affected?

The reason they use contrast (gadolinium) is to make any lesions in the brain matter "light up" under the MRI. Makes it easier for them to see if there's anything wrong. I know that lesions CAN be seen without them. One of my MRI's that I had, they screwed up and couldnt get any contrast into me. Still had a lesion show up on the MRI, so they made me come back a week later and do it again. (and you know what? they make you pay for the MRI even if they screw it up...that hurt, paying for two MRI's that year)

[ANNagain]

Confused16,

I understand why you are concerned. Please know that even if this turns into MS, life can be excellent. Most people seem to believe that MS "is a wheelchair disease." That is not so for most of us.

I had my first hospitalization at 21 and am now 61 and still walking. This week I walked to my Physical Therapy appointment because I missed the bus. Your daughter will not be exactly like me but she won't be exactly like the worse things you have read and are worried about either.

Here is the most reliable info that I found for you:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001750/
About 1 in 5 patients with a first episode of optic neuritis will develop myelin sheath inflammation elseswhere in the body, or will develop multiple sclerosis.

It makes perfect sense that she was fatigued and slept. One of the major symptoms of demyelinating disease is overwhelming fatigue. Sleep is not necessarily reviving, however.

Regarding the steroids (both prednisone and IVSolumedrol (IVSM) are steroids, the standard treatment seems to be w 3 or so days of IVSM w or w/o an oral taper of prednisone. Here is a statement from the Mayo Clinic:

Intravenous steroids. You'll likely receive steroid therapy by vein (intravenously) for a few days. Intravenous steroid therapy may accelerate vision recovery, but it doesn't appear to affect the ultimate extent to which you'll recover vision you may have lost.
Oral steroids. After intravenous steroid therapy, your doctor may prescribe an oral steroid called prednisone for about two weeks.

I hope this helps you.
ANN

Hi Erin- Crosspost

ANN

[Confused16]

Thanks so much for the great info and encouragement! My daughter is 14. Her optic neuritis wasnt too bad it was getting worse though before hospitalized. She had color dimness in one eye but had bad pain and blurriness in both eyes. It then spread throughout her face. Now to her arms and hands. Her strength still seems ok, is that a good sign? Just tonight she is complaining of pain in one knee and ankle. I am thinking this will remain a mystery for a while. If she does end up with an MS diagnosis, it's comforting to know there is great support and positive stories here

[tkrik]

Everyone has given you some great information. I just wanted to let you know that I will keep your daughter as well as you in my prayers and hope for a quick recovery for her. Please keep us updated on how she is doing.