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) I have been recovering from another attack and it always makes me irritable. forgive me.. I didnt mean to waltz in here answer 2 questions and flip.. so please accept my apology, and lets forget this.

And one thing about the vision again.. for double vision I know they make glasses with prisms that help, I looked into it when I had double vision once. Another thing I know about cental vision loss is macular degeneration causes this, so maybe you should get it checked out by an opthamologist.

and again good luck.

[JCmcc]

Mam,
   Your presuming that people take what I say to heart, but, unless you know them you cannot be certain of this. Everyone who posts here is an adult and I canno tbe responsible for them not heeding what I say: "I am not here to give professional advice." There are a ton of people on here who scramble for answers and many who give mis-information. I believe that the information I give is rarely wrong. Whether or not I am a physician or a medical student or whatever is unimportant because I am anwering as just another person anyone can be wrong at any time.
   Your claims are concerning. If you researched my posts and found these significant errors copy and paste them and post them in here so I can answer to them. If not, your words are a bit empty just like the person who said that I said I have both Lyme and MS and failed to produce the supposed posts which stated that I do. Very irritating.
   Many people on here are suffering much worse than you and they are not "catty" and as far as I am concerned there is not excuse for it. If you can admit to being "catty" then you have awareness and there is not one single excuse to continue. By responding again you have re-opened a closed subject and are nearly accusing me of giving misinformation leaving it impossible for me not to respond. This is unfair to me and to the post.
   Your apologies are shallow because you write a ton of attacks and then combat yourself, with apologies. Very odd. The point is. You do not NEED TO KNOW if I AM MALE OR FEMALE and it does not matter if I am wrong or right because this is not ADVICE but IDEAS. I am not here to provide a sense of security for anyone and I never write in a way that suggests that I am .
   What I cannot come clear with is how a person like me, who ois absolutely educated, who cares, who takes their personal time to come on here because I remember the fearful moments and answer questions, can be attacked, accused, and harassed?
   I am very seriously bothered by this. My responses on here will become less and less because I can no longer indulge failures of judgment such as your postings about me. My rep here is good and people love my comments, aside from you and a very few others. Jealous, nosey, I do not know what your problem is but you have your diagnosis therefore I should not eve be wasting my time with you.

JCmcc.

[sweet_g_grl]

All i did was try to explain myself.. i said nothing else and apologized.

What I said about female versus male.. was so that you would not take it personal, and that is what you did, you twisted what I said.

Your misinformation was when you said no lesions no MS.. which is simply not true anymore, it is traditional but not manditory. I was diagnosed without any, and I know others who are the same way, granted I have a bunch now. I never said you completely gave absolute false information, I just said that some was incorrect.

I never said you werent respected in this "community" I expressed myself, and admitted my wrong. You said you couldn't not respond, well everyone else had responded and I had not had the chance to, so that was my way of trying to clear the air, I did apologize.

Alot of people do take what other people say to heart, I know I did when I got sick, I was terrified, no teenager should have to go through what I did when I was that age.

You arent the only one who is educated, who cares, who takes their personal time to come on here. I remember the fearful moments too. I have no reason to be jealous of someone I do not know, so that is not not an issue.

So please do not twist what I say around, and do realize I apologized.

[young at heart]

This thread has gotten way out of hand.I do have MS and ask the neuro a very valid question and this question has turned into one big squabble.
I apologize to the neuro that has to read all this,that isn't fair to him or her.

[hopeforbest]

I doubt seriously that the neuro takes the time to read anything except the question.

[JCmcc]

Alright, lets just end this. I understand, no big deal. Enough.

Now, I thought that we had settled this NO LESIONS, NO MS issue elsewhere?

Alright and yes, my stance is quite traditional. I-meaning me, still believe, that if a person does not have lesions; hence the term Multiple Sclerosis, that they do not have MS, but rather something different.

Perhaps you can educate me and tell me if you ever found lesions, and, if so, this would be interesting.

If a person has oligoconal bands and no Lesions and the symptoms and pathology of MS and Lyme disease, et al, was ruled out: I might say, "Possible MS" but according to the standards for a perm. diagnosis you need to have 2 lesions, in 2 different areas of the CNS, disseminated in space and time. That is black and white.

Have you ever seen another neurologist?

Never allow yourself to become married to your diagnosis and believe me-I know suffering.

I am sorry to you for the misunderstanding and my twisting your words around, if that, is what happened.


Regards,
JCmcc.

[sweet_g_grl]

Yes I have seen another neuro.. my first was a jerk, so I witched.. and I now see one at UC Davis, I also have an "emergency" neuro here is town, since my neuro is about an hour and a half away, he thought it would be a good idea. Its ok I suppose.. always good to have a back up.

[JCmcc]

OK, yes, jerk is not an odd word often used in the realm of neurologists. :(

So, do they all agree on MS?

Do you have lesions now?

[sweet_g_grl]

Yeh.. huge jerk.. he was more concerned with the way the door closed than me.. (no joke) I think that if some of them are really good, just a few out there that don't enjoy what they do give neuros a bad name.

They do all agree I have MS..

Now I do have lesions.. I have 3 on my cervical spine and like 9+ in my brain (not exactly sure, just over 9). I havent had any new in a little over a year though..


and now.. young at heart.. did you ever find out what was wrong?? or go to an opthamologist??

[young at heart]

Yes, I'm having about of optical neuritis and gonna ride the storm out.

[JCmcc]

This is horrible news and I am very sorry to hear of your Optic Neuritis. Have you seen a neurologist and are you having this symptom alone? If you have seen a neurologist what is your diagnosis? You may have already indicated but it is slipping my mind.

How long have you had ON?


Regards,
JCmcc.

[young at heart]

I have MS,confirmed by the cleveland clinic.I have had ON probably at least 6 weeks or so.I tried to ignore as I do my other symptoms.
I went to 4 neurologist which all confirmed MS.I just started rebif.
I have to wear a KAFO ,the ms has effected my right leg.I refuse to give up or into this disease.
I have a host of symptoms,relapse 101.

[sweet_g_grl]

sorry I haven't reposted to you.. I am sorry you are having ON.. its really hard.

Get well soon!

[grannyfanny]

I'am 48 years old and have three grandchildren. i was on rebif for two and a half years and now I have been on the baclafin pump for two in a half years. Now five years ago they said I have M.S. now they tell me they are not sure. Both my legs are weak, left arm goes numb, left eye is blind, lower back pain that just will not stop.Now I have seen six different doctors four say M.S. and the other two say they are not sure. The funny thing about it they all work in the same office building. So if anyone out their can help please do so I'am going crazy.

                    grannyfanny

[grannyfanny]

I'am 48 years old and have three grandchildren. i was on rebif for two and a half years and now I have been on the baclafin pump for two in a half years. Now five years ago they said I have M.S. now they tell me they are not sure. Both my legs are weak, left arm goes numb, left eye is blind, lower back pain that just will not stop.Now I have seen six different doctors four say M.S. and the other two say they are not sure. The funny thing about it they all work in the same office building. So if anyone out their can help please do so I'am going crazy.

                    grannyfanny

[oodabeebonc]

I was wondering if anyone out there can help....I am a 40 yr old mother of 3 with varying symptoms....ringing in ears, floaters, vertigo, muscle & joint pain, frequent headaches, tingling in hands and numbness in toes. I have been treated for depression since the mid-90's but don't feel depressed. I have no energy and can't make it through the day without a 1-2 hour nap. I gain weight for no apparent reason, feel fuzzy-headed and often confused...for example, not recognizing familiar areas when I am driving, not remembering what I am supposed to be doing...I check my blood sugar on a regular basis, always within the normal range, my blood pressure is always within the normal range. I have frequent sinus infections, and UTI's, and get a yeast infection at least once a month. I have been tested for thyroid, normal range, lupus, normal also, lymes, negative. Around Christmas, I was seeing my doc about once a week for one thing or another and he mentioned that it might be MS. Without insurance, he hesitated to order an MRI. The next visit to him, he said fybromyalgia but didn't want to commit it to black and white cause he wasn't sure and said to come back in 3 months. He upped my prozac to 40 mg, wellbutrin to 10 mg and gave me an assortment of allergy meds. I felt that he realized that without insurance, I couldn't afford to go for the testing so he medicated me to get me out the door. So, rather than up my anti-depressants, since I felt they were causing a lot of my fuzzyness, I have weaned myself off them to see if the symptoms I was experiencing were side effects from the meds. So far, I am not as fuzzy-headed but am suffering from extreme vertigo every night and headaches off and on all day. I have been off the anti-depressants for about 6 weeks now so I don't think it is withdrawl from them. I am too tired to hold a job and barely am able to keep up the house and do my daily chores. This has been going on whether or not I am taking anti-depressants. So I guess my question is....should I go ahead and switch docs or see a neurologist for an MRI. Any suggestions?

[oodabeebonc]

Oh yeah, and forgot to mention the 6 month bout with hives and facial swelling all last summer, bladder incontinence(about 5 years now), pvcs (about 10 years), and the bothersome floaters I have had for God knows how long!! anyway...help!!

[Annie62]

You might want to ask about getting your B12 level checked-just a suggestion.  It can cause some if not all of your symptoms.

[oodabeebonc]

i believe one of the tests the doc ran before christmas was for pernicious anemia, isn't that B-12? If not, will look in to it. Thanks!!

[Annie62]

Yes, the test for pernicious anemia involves B12 absorption.

As far as your incontinence that you have had for about 5 years (that is about how long I've had mine (though mild), are you talking about urge incontinence (where you get the sudden urge to pee and have to run to the bathroom) or just stress incontinence (with coughing, sneezing, etc.)?  Also, I'm curious, do you ever have urge incontinence in the shower (I have had this happen to me numerous times just lately).  I can't make it through a shower--especially if I am in there a long time washing my hair/shaving.  I invariably cannot hold my urine at the very end of the shower.  I really believe it is due to the warm water (heat).  I am being worked up for autonomic neuropathy as well as MS, but would like to know if anyone else out there experiences this and if they have MS.

[oodabeebonc]

The incontinence part...both frequently have to go and also sneezing, coughing, lifting, walking...whatever. Also pretty crazy, I can walk into the bathroom and barely get my pants down before I start going. I was on meds about 5 years ago for the heart pvcs that actually made it worst. That doc thought I was crazy! Said he had never heard of that before. Then there are some weeks that I have the bladder of steel. Don't feel the urge to go as often and don't even have to wear a pad to catch leaks. Just don't understand my body anymore. Feel like I am really falling apart!! The UTI's are the worst though. I can feel fine, then all of the sudden, boom!! Can't go! I really don't like taking meds because you never know what kind of crazy side effects you will end up with, and it seems I am very sensitive to the effects of meds. I am new to this forum, do the doctors read these posts and answer them when you just post like this or do you have to start your own thread for that? Just curious, the few times I have tried to post, they are not taking any new posts. Anyway, thanks to taking time to read my troubles and answer!! Have a blessed day!!

[Annie62]

The only posts that the doctors both read and answer are the ones by those who are lucky enough to click on the "Post a Question" button and actually get through at the top of the first page.  It sounds like you have already tried it a few times and it told you no new questions were being taken for the day.  It took me about 4 months to get through with a question, but if you are persistent I'm sure you will get through sooner than that.  The best time to post in the eastern time zone seems to be before 9:30 a.m. or so.  If you hit "post" at the bottom of one of the threads already started (like this one) you are not posting a question to the doctor, just patient to patient.  

[oodabeebonc]

Thanks Annie, will keep trying! I found a web site the other day that will help pay for the initial MRI for MS so hopefully I can get that done so if that is not what is wrong with me then I can keep trying to find out what is going on. Today my back hurts so bad I can hardly walk!! My regular doctor thinks I am crazy or just a hypochondriac so I think I am going to look for another doctor. I need to try and get in to see him cause I think I have another sinus infection. He is pretty good about treating those. My son brought a cold home from school about a month ago and of course I got it and can't shake it. When I had a bout of sinus relate stuff last spring, lasting about 4 mos., Doc kept me on different antibiotics but didn't seem concerned that it wasn't clearing out. Seems like every time I get a sinus infection, I end up with a UTI too. Just can't figure that one out, other than maybe my bladder muscles get irritated when I cough or sneeze and wet my pants. When I went to the doc for the one I had in November, I had blood in my urine. He wasn't concerned about that either, just said, bad UTI or maybe a kidney stone. Took me 2 different antibiotics to get that one cleared out. Anyway, enough rambling about that!! Have a great day!!