Need help with opinions
 

I think I am having trouble with my Neuro dr.
With my diagnosis 2 years ago my right side has been affected. I had numbness with no pain on face, right arm, and right leg, with no pain. Within 6 months I just have a change in sensation on the entire right side. If you would do the sharp and dull test I would not be able to always tell the difference. Shortly after that I started getting achiness in right leg and arm and headaches on the right side. They changed DMD and started on Lyrica.
A year ago I had difficulty with vision in my right eye that got bad enough that my Dr had me do a round of steroids.
About 2 weeks ago my right eye started affecting me especially when tired. Now my right eye is bothering me all the time. I can read large font but to read a book or check dosages of medicine at work I need to cover my right eye in order to see it. My right eye aches.
The last week the numbness in my right side is worse and pain in right ear, nose, chin, arm and leg that is not relieved by lyrica.
Nuero said Friday to wait to see what Nuero optho sais. I can not get into him until February 14.
I called him today to say I can not tolerate the pain and it is not relieved with lyrica. The lyrica that I am taking keeps me from having like a restless leg syndrome from happening but does nothing for this pain. He chose to just up my Lyrica to the maximum.
I say I am having an exacerbation and need steroids. I have not specifically said why not steroids? That is my next step. Just wanted other opinions about if this is an exacerbation. This is highly unusual for my nuero to be like this. :confused:

It does sound like you may be in an attack, defined as having "new, or worsening of existing symptoms, lasting longer then 24 hrs".

I have never done steroids (due to the potential short and long-term side-effects), but I thought I might if my eyesight (or breathing) was effected. However, the most recent trial called "Optic Neuritis Treatment Trial" indicates that steroids are not necessarily helpful:

These relevant results are briefly summarized below:

- Visual recovery begins rapidly (within 2 weeks) in most optic neuritis patients without any treatment, and then improvement continues for up to 1 year. Although most patients recover to 20/20 or near 20/20 acuity, many still have symptomatic deficits in vision.

- The probability of a recurrence of optic neuritis in either eye within 5 years is 28 percent. Visual recovery after a second episode in the same eye is generally very good.

- Treatment with high-dose, intravenous corticosteroids followed by oral corticosteroids accelerated visual recovery but provided no long-term benefit to vision.

- Treatment with standard-dose oral prednisone alone did not improve the visual outcome and was associated with an increased rate of new attacks of optic neuritis.

http://www.nei.nih.gov/neitrials/vie...Web.aspx?id=47

Do you know if you have spinal and/or brain lesions?

Cherie

If the pain is to the point that it is intolerable and interferring with your ability to function, if it was me, I would go to the ER. Eye pain like that is nothing to mess around with and the NeuroOpth's office should know that.

I hope you get taken care of ASAP!

I agree. If it hurts that bad go to the ER. When I had ON in august 2006, the night before I developed the blind spots in my eye, I had such horrible pain in my eye, I probably should have gone to the ER, but it was such a bad pain, I couldnt even get up off the bed to go ask my dad to drive me to the ER.

When I got the blind spots, I had to close my left eye to be able to read anything.

I agree with all that has been posted. You NEED to get some treatment and that may include you specifically asking for an IV pulse of steroids. At this point it sure can't hurt you.

With these numerous and observable symptoms I don't know why your neuro isn't asking for more testing to be done. Seems like the reasonable path to me.

I am in agreement with all the above too! that makes 5 of us, which should be plenty!

Go to ER or hammer the neuro optho to see you NOW!!!

See someone TODAY!

Tell us what happens!

Ditto! I hope you are feeling better soon!! :hug:

#7 here! If the pain is that bad you need to be seen today. February 14th is a long ways away when you are in pain. If you can't get in to the neuro-ophthalmologist then certainly go to the ER.

Let us know how things are going for you.

of course i agree.
you do need an eye exam asap.

please do keep us posted.
i'm sorry you're going thru this.

update
 

Still hanging the same. Thank you for all the information and confirmation of symptoms. I kind of like Cherei's (terible speller) idea. I am a conservative type of person and do not want IV steroids, but get really nervous when the vision is affected. That is a wonderful website with good research.
I am not having severe pain in the eye other wise I would have been parked in the dr office without an appointment or in the ER. :)

Mary