Optic Neuritis?

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/6/2009 2:55 PM (GMT -6)   
Hi everyone,

I don't have a diagnosis yet. MRI is scheduled for the 16th. But I have a laundry list of symptoms now.

I have color vision changes in my right eye. Losing the red. It's not completely gone, but it's much less than my left eye. Right eye is also dimmer and flat looking. No contrast or "punch". I don't have any pain, unless it's accompanied with a headache (which always happens behind my eyes). I also don't have a distinct blind spot. I have a grey blob that is relatively central. But no blindness.

Does everyone get pain and a blind spot? Any info would be so helpful. I will be calling my eye doctor tomorrow morning.

Hope everyone is having a restful weekend,
Ginny

Gretchen1
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Date Joined Jan 2007
Total Posts : 3539
   Posted 12/6/2009 5:23 PM (GMT -6)   
Hey Ginny,
 
That red color loss is very typical of Optic Neuritis.  The "headache" behind your eyes also sounds like Optic Neuritis.  Your discription sounds pretty much right on for Optic Neuritis. 
 
I was just recently treated for Optic Neuritis.  The typical treatment is solumedrol; 1,000mg via IV for five days. 
 
I had pain but no blind spot.  I lost the color vision and had extremely blurry vision (legally blind).  It took 3 weeks post Solumedrol to regain some vision.  It is better still.  I did get the color vision back but I still have some blur.  I hope it resolves completely. 
 
I hope you get some answers real soon, Ginny. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/6/2009 8:54 PM (GMT -6)   
Hi Gretchen,
Thank you for your reply. I spoke too soon about not having any pain with this..... about 2 hours ago, pain started behind my right eye. Hurts most when I move my eye around, but even with it still, it doesn't feel good. The whole eye feels kind of swollen actually.

So I will absolutely be calling my eye doctor first thing tomorrow morning. What a crazy ride it is having autoimmune diseases....

Sleep tight,
Ginny

Oh, with the IV solumedrol, did you have to stay in the hospital for those 5 days or did you do it at home?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/6/2009 9:17 PM (GMT -6)   
Make sure you see an eye doctor (opthalmologist).  The solumdedrol is usually done at home.  When I have to do it, I go to an infusion center and get an IV that stays in for the next five days.  Then I set up the infusion there at the center with a nurses instructions, they want you to prove that you can manage this.  Then you sit and wait; takes about two hours.  They observe you for any issues/drama.  I have never had any.  Once you have done the first infusion, you can go on home.  You take a happy bag of solumedrol home and you do the next four at home yoursef.  They show you how to flush with saline before you start and flush with heprin when you are done.  If you have any problems, you call the infusion nurse.
 
Get a hold of me if you have to do the solumedrol.  There are some decent side effects you are going to want to be ready for. 
 
My eye hurt all of the time and hurt more when I moved it.  You, again, have prefectly described it.  I am sorry!  I would be very surprised to hear that you DON'T have Optic Neuritis. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/6/2009 10:05 PM (GMT -6)   
Thanks Gretchen! You can be my virtual nurse! Haha!

I've been on solmuderol before, a few times. But always in the hospital. For Lupus stuff. I don't recall any really wild side effects. Except that I felt really good! What have you experienced? Oh wait. I've only been on 100mg of it. Not 1000. Sweet mercy....

I'm glad I can do it at home. That's a good thing.

I will be shocked beyond belief if i don't have it too. If not, what the heck is it?!

I've done a bit more research on ON and it appears that nausea is a contributing symptom to it. That would make sense in my case. I've been nauseated for 6 weeks every day. This is all so wonderful....

Good night Gretchen!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/7/2009 3:24 PM (GMT -6)   
Hi Gretchen,

My optometrist says she's 99% certain I have Retrobulbar neuritis. Inflammation of the nerve fibers between the back of the eyeball and my brain. She doesn't have the right equipment to see behind my eye so I have an appointment with an opthamologist on the 21st. She definitely can see that the optic nerve is "pale" in color instead of bright. Retrobulbar Neuritis is very common with MS. So now I wait! If I have a sudden deterioration of my sight, I have to go to the ER. Otherwise I just cope with it till the 21st.

Hope your week is off to a good start!
Ginny

nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 12/7/2009 3:39 PM (GMT -6)   
Ginny, so sorry to read that you are still going through this.....but it does sound as though you are getting closer to a diagnosis!

You're in my thoughts and prayers,
JoAnn

P.S. Here is what Gretchen had to say about her side effects from 1000 mg solumedrol, from the following topic:

www.healingwell.com/community/default.aspx?f=29&m=1655599

For an MS flare, I have done 1,000 mg methylprednisolone. This is done via IV. I have to go to an infusion center and they put the IV in and do the first infusion there. It takes about 2 hours to do an infusion. Then they send you home with four more days worth of "solumedrol" .

I HATE it. It is completely miserable. After about 20 minutes you can tasted it ......sort of like a metallic taste. I don't sleep for the first 48 hours without a strong sleep aid. It gives you the worst killer heartburn and you will think you are having a heartattack. It makes you completely psycho/crazy! It does help a bit to shorten the symptoms of a flare. It is not a treatment. By the time I am experiencing symptoms, the MS damage is already done. It just takes a while for the level of damage to show itself. It can take weeks for the flare to subside so you will know what your new baseline will be (what permanent damage you will be left with).

I don't do solumedrol unless my vision is affected. Solumedrol is particularly effective in shortening MS vision issues. I recently lost the vision in my right eye. After the solumedrol, I expereienced results in about 3 weeks. Without solumedrol, it would have taken perhaps 3 months.


Gretchen, please forgive me for answering for you! :)
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/7/2009 10:30 PM (GMT -6)   
JoAnn,
 
No worries!  Thank you for jumping in. I tend to only check this forum once a day.
 
Ginny,
 
Retrobulbar is hard to see in an exam.  An opthalmologist might be able to see it better.  That pale optic nerve is pretty tellling.  I am so sorry!!! 
 
One thing to remember, with MS, solumedrol is only a symptom treatment.  It is NOT an actual treatment that will stave off disibility.  Once you experience symptoms, ALL the damage is already done.  The solumdrol is not going to help things; it only makes your discomfort shorter.  For example, if an MS flare is going to result in numbness and paralysis in my left hand, then solumedrol won't fix that.  It only helps you get to your inevitable baseline faster.  I hope that makes thinks clearer.  What I am trying to say is, the solumedrol is totally optional.
 
I think you are back to trying to rule out MS again.  I know you were leaning towads neuro lupus.  I hope it is not MS but I am here with any questions you may have if that is what you are facing. 
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 12/8/2009 5:31 PM (GMT -6)   
Hey Gretchin...I had the 1000mg for 3 days in a row...After the first one my face swelled up real bad. I ended up staying overnight for one of the IV's but then I had to come back to the hospital the next two days to get the other doses. Did you swell up really quick after it? I agree with all your other side effects. I think the heartburn is the worst allthough I couldnt do anything to get the horrendous taste out of my mouth.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/8/2009 6:40 PM (GMT -6)   
Oh crappers, that steroid sounds horrible.... Thanks for the heads up. I hope I never have the need to use it and I know I won't have the desire!! Hahaha.

Update... Saw my psych this morning and filled him in on the vision stuff. Turns out, his dad is one of the top Opthamologists in the province. So he called his dad while I was in the office to ask what should be done next! Dad said that I need an urgent MRI and everything including the specialists needed will fall into place after the results are known. I should be getting a call tonight or early tomorrow with an appointment for an MRI to happen in the next 48 hours.

I also talked with my rheumy. She's not sure what to think. Until we know what we're dealing with, she doesn't want to up my prednisone. This could still be a Lupus issue. The things that aren't screaming Lupus are the jerky movements and speaking problems. She did wonder if my complex partial seizures are back...... I don't even want to go there in my head.... LOL. So, yeah, I'm just waiting now for the MRI clinic to call me. It's taking forever.... I thought I'd have heard from them by now. Waiting makes my anxiety go koo-koo.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/8/2009 7:28 PM (GMT -6)   
Hi Amy!
 
That is my sister's name!  Ok so I have never had the extreme swelling.  I never had weight gain either.  In fact, it made me feel so awful, that I usually lost a few pounds.  The taste is really bad isn't it?  I tell people, "My mouth tastes the an old car engine smells." That is the best way to describe it for me. It is oily metallic.  SOOO gross.
 
 
 
Ginny,
 
Good luck!  I have heard how fast those "emergency" MRIs can take in Canada!  I am glad you got this Psych to help you!  That is an awesome connection!  Yay!  Hopefully you will get some answers soon.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.

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