central vison loss with MS

[young at heart]

I have recently lossed the central vision in both eyes.It has usually effected the left eye and normally appears when I'm over heated,but this is not the case this time,I also have double vision.I am currenetly on rebif.

Several years ago I had a severe reaction to decadron IV steroids do to lumbar myelitis,so my neuro is reluctant to do IV steroids at this point.

I've been in an MS attack for a while and some of the symptoms I had from the last major attack 2 years ago are still present.Does this mean they are permanant?

Is there any other route that my neuro can take to slow the progression down.I have basically losted the majority use of my right leg and a KAFO has helped.I'm trying to keep my mobility as long as possible and stay as active as possible.

Current meds are baclopfen,zanaflex,valium,ativan,vicodin,oxycontin plus rebif.Could any of these be effecting the central vision loss.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.    
   From the story and symptoms that you describe, you have multiple sclerosis that is changing from the relapsing-remitting stage (isolated attacks that resolve or at least nearly resovle) to the secondary progressive stage (where each attack does not resolve completely and progressive disability develops).  That is not to say that all of your current symptoms will be permanent (some may get some better), but over time you will accumulate permanent disability.  I think it is very unlikely that you had 'lumbar myelitis' as a reaction to IV steroids (decadronas you mentioned, solumedrol/methylprednisolone is preferred for MS)), it is more likely that you had lumbar myelitis despite IV steroids (this is often referred to as a failure to respond to IV steroids).  When patients do not respond to IV steroids, IVIG (intravenous immune globulin) is a reasonable next step.  Other things that may help you is an intrathecal baclofen pump (it pumps baclofen directly into the spinal canal), which gives more relief of spasticity without the sedation of oral baclofen.  I applaude your efforts to maintain your mobility, and a positive attitude will serve you well.
I hope this was helpful.

[JCmcc]

how many times have you posted on here?

[young at heart]

I am following the forum rules,2 questions in a 6 month time period.If you honestly need to know 3.First one was a year or so ago.

[JCmcc]

why am I never able to post a question. I have never posted 1..

[young at heart]

It depends on the timing,posting times change,this morning it was very early when I posted.Beings there's several time zones the posting times change.Try between 6 am -11 am eastern time zone.

Don't get angry with me because you couldn't post,now I feel bad you couldn't.

I read your post on the patient to patient forum,I'm sorry you've been so ill.I beleive I read that you have MS and lyme.Both difficult illnesses.I wish you well and hope you can post here soon.

By the way it took me almost a year to post my first question.

[JCmcc]

Patient to Patient, post. I do not remember. No, I have Lyme induced MS.

The lesions from Lyme are unable to be differentiated from MS.

I have late stage Lyme disease. Or at least, they are pretty sure.

[Carol in PA]

JCmcc:



Here are your posts on "The Neurology Support Forum," which is a patient to patient forum:



http://www.medhelp.org/forums/NeuroSupport/messages/682.html

http://www.medhelp.org/forums/NeuroSupport/messages/679.html



When you open to the Med Help home page, you'll notice the list of forums on the left side include both "Neurology" and "Neurology Support."

http://www.medhelp.org/



Best,

Carol

[JCmcc]

Neither of those indicate that I have both Lyme and MS.

[sweet_g_grl]

This isnt meant to argue.. so, to the one that started this, just let it go.. yes it can be frustrating, but there is no need to take attention away from the question at hand. You dont need to be defensive, this forum is to support eachother. You never seem to want to disclose why you are here and you seem to have an answer for everything, but yet you won't tell us what you are about, people would be more trusting.. now don't come back and attack me.. I am sure that some people here agree.



And to answer youngatheart I have heard that after a year symptoms are more or less permanent, which is just the general rule, but it doesnt always mean that. If you cant to steroids, why not IVIG?? I havent taken it, but people I know have, and it helped. None of my symptoms have lasted longer than 2 months, so I cant tell you from personal experience. Good luck to you!

[JCmcc]

Hello, GRL

  First of all type is hard to measure, so I invite you to relax. I do not need to tell you anything as to why I am here or if I am a physician or not hence the type: I am not here to give professional advice.

  My knowledge is a gift and it is given in kindness and has been subsequently helpful.

  This is indeed is not a place to argue and I do not know who made you a moderator. You were never called upon nor were you adressed. You have put yourself in the middle of a confusion that was not escalating. You need to as well follow the rules.

  The same people over and over post and there are many sick people who are unable to post. Luckily I know how to read my own MRIS, etc, and used myself as an example.

  I have nothing more to say on the issue.



Regards.

[young at heart]

You ask a very valid question to me about the posting.I hope you get to post soon.

As far as disclosing yourself,this is a private forum and by all means your privacy is well respescted.I have read many of your replays to others and you are very knowledgeable.

Having a neurological disease stinks,but we are strong and we manage to get through it daily.

This partcular thread just got out of hand by a simple valid question that you had every right to ask.I wish you well.

[young at heart]

I stated I couldn't take decadron IV steroids.Treatment for MS is a different steroid.But still a little leary.



Please don't be hard on JCmcc,he ask a valid question,which I answered accordingly to the forum rules.



If you would of looked at a reply up further he has lyme induced ms.late stage lyme disease and the info he has provided to others is very informative and gives many hope and alternatives to just looking at MS.He gives many hope.



Living with MS is difficult and lyme in early stages can be helped.



With JCmcc in late stage lyme disease with ms he is coping with not one neurological disorder but two.Please give him a break,this question was about visual problems,thank you for answering.

[sweet_g_grl]

It wasnt just this post.. it was others that got to me.. Some of the information given isnt always correct. People will ask something and although it is stated "I am not here to give professional advice" some scared people take it to heart.



I did look further into the posts and when it was brought up if lyme and ms were there, he said nothing proved he(or she) had them, implying that he did not. it kinda went back and forth.(sorry I keep saying he, I dont know male or female, sorry if I am incorrect) Now, JCmcc.. how does  Lyme induce MS?? I have never heard of this, and I am very interested. when I was dx'ed with MS I know they tested for lyme.. but thats all I know that lyme mimics ms.. hmm.



I do follow the rules, I have never posted a question here.. I try to answer to people to the best of my ability.



Im sorry Im catty(sp