MS and Nystagmus (Is nystagmus reversible?)

[ddo513]

I am a 40 yr old female who was just diagnosed with "probable MS." A month ago my left eye felt odd and I lost some vision - it continued this way for 3 days and then the right side of my face went numb. The ER took an MRI and I had 7 lesions indicative of MS. I had iv steroids for 5 dyas. The right side of my face healed, but the left eye remains a problem. The neuro says I have nystagmus and extensive nerve damage. I am constantly dizzy, off balance and my vision is not good. I can't drive. I am going to a neuro ophthalmologist within the month by am trying to find out info before going. Is this nystagmus reversible? Will it heal? Will it get worse? Is there anything they can do to help with the constant motionsickness feeling? At first they told me it might get better in 2 months (it has been one), but now they say it might never get better. What are the percentage of people in which the acquired nystagmys gets better? Thanks for any info.

[Sumanadevii]

I just went through a very frightening time with my vision.  Each day I woke and thing seemed to go to worse.  It was gone in four weeks time.  Now I just seem to have a little haze in my left eye.

I know it is so scary.  I hope yours clears soon.

[Dr. A. Srivastava]

Hi, Thank you for your question. Multiple sclerosis arises due to inflammation of myelin sheath (Brain & Spinal Cord) after injury or inflammation (infection/trauma) that leads to demyelination. Common symptoms related to MS are fatigue, cognitive impairment, visual (nystagmus, diplopia), impaired sensation (parasthesia), muscular weakness, bowel & urinary incontinence. Unfortunately, there is no permanent cure although symptomatic relief could be provided with steroids, plasmapheresis, interferons and neuro-rehabilitation. For nystagmus, medical treatments like gabapentin and baclofen that can suppress nystagmus are useful. Additionally, injection of botulinum toxin, contact lenses, electrical stimulation over the forehead, and acupuncture to the neck muscles has been reported to reduce nystagmus and improve vision in some patients. Please consult a neurologist for a better insight of your situation. Hope it helps.

[Zacksmomi]

I am sorry to hear about your symptoms.  I have read it can take 6 months or even a year for healing from an attack before you should be set that your symptoms are permanent.

I do believe I read recently that Quix posted about improvement with her nystagmus.  I too have nystagmus, but not very severe.  Do the Dr's think your balance issues and dizziness is from the nystagmus?? You can have these as seperate issues.

You are in a confusing place right now, but this forum has many answers.  There are health pages in the upper right corner with tons of info about lesions and if they can heal, how long it may take and more.  

I wish you a speedy and full recovery.
D

[Lulu54]

Hi ddo, I don't think I have crossed paths with you yet, so let me issue a welcome!  It gets quiet around here on the weekends so don't be disappointed if you don't get many replies until Monday.

First let me say I am sorry you are going through this - but I hope you get a definite answer soon.  Being "probable" is a hard place to be.

Acquired nystagmus - caused by MS - may go away or maybe not.  How this disease plays out continues to be a MyStery and we can't predict what is going to happen next with our symptoms.

I would ask the neuro opthamogist about a referral for therapy to treat the nystagmus.  There may be exercises that you can do to retrain or strengthen your eyes.  

The nerve damage can heal, but it often takes a long time.  I will hope that your wait to be better will happen, and happen soon.

Welcome again and I'll watch for you around here.
be well, Lulu