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Chinacat1973 08-01-2002 06:13 AM

Hello all!
I read through alot of the messages and got some more insight to my on going problems, I am glad to have stumble acorss this cite.
well it all started July 3rd with flu like systoms, which developed into optis neuritis, i was just comming back to work from vacation, so i was a week in the very hot sun, then optic neuritis set in. Went to the emergency on the 5th because of double vision(only when looking up, far left and far right)I was given an MRI and then admited over night, released the next day, TOLD THAT i WAS UNDER ALOT OF STRESS ( BY A NEUROLOGIST) AND THAT MY VISION WOULD RETURN TO NORMAL SOON.oN THE 8TH THE VISION IN MY RIGHT EYE WAS SERIOUSLY WORSE AND GETTING DARKER, WENT TO AN EYE DOC HE SENT ME THE NEXT DAY TO AN EYE SPEAICALIST AND HE SAID HE THOUGHT IT WAS MS.He sent me to a new neurologist and he put me on solu-medrol steriods thorw IV 1g/day 5 days and took me out of work for a week that was 22dn-26th, that was hell, side effect are bad.and he said I should decide if i wanted to have a spinal tap, not liking that idea, but still up in the air about that, is it really necessary??
sO I go back to see him today, my vision is the same dark and blurry in the right eye. He seems to be a really good doc but he wont discuss MS. All the info i have read about solu-medrol said that it is given to patients w/optic neurits to sub-side another bout of MS. The doc also told me when I asked about lessions in the MIR, that there were none, and he said that they always show if you have MS, I have read this isnt always the case. So i was wondering if anyone can give me any info or adive about my case.I have had other systoms as well such as tingling feet and hands, fatigue, I alway just thought that being over weight it was bad circulation, I am a 29yr old female living in eastern Canada, 5'2 160 pds.
Thank you all for taking the time to read me entry,
your opinions and suggestion would mean a great deal to me!
LOoking forward to hearing your reply's


F-Man 08-04-2002 12:16 PM

I would say that all of your symptoms are consistant with MS. They may be consistant with other conditions as well though. I would suggest not only seeing a neurologist, but trying to find one who specializes in MS. I the city I live in, Baltimore, Maryland, USA has a major MS center at the University of Maryland where some of the best MS neurologists in the country, if not the world can be found.

I would have to say that I disagree with the doctor who said that an MRI provides a definite diagnosis of MS or not. One of the main disagnostic tools, is simply your symptoms. The spinal tap is also a strong indicator. Different people have different experiences with this procedure. For me it wasn't bad at all really. Felt a little weird, but didn't hurt or anything. Some people have nasty headaches afterwards for several days. I didn't. Other test include video and audio evoked response tests. The test how video and audio stimuli travel through your nervous system. The final diagnostic tool I can think of is ruling out other possible causes. Lymes disease can have similar symptoms to MS, but can be generally diagnosed through a blood test I think, so basically if you rule out other possible causes of your symptoms, that helps with an MS diagnosis.

My final advice is to check out the site [url=""][/url] On that site, you can post questions and MS doctors will answer them. They also will recommend good MS neurologists in your area. Not sure if they just recommend ones in the USA or Canada as well.

Anyway, hope some of this helps.

nj mccutchon 10-10-2002 01:14 PM

I hope your eye is better and that you had the spinal tape. Your symptoms were like mine, and the optic neuritis pushed me into "definite" category. I did have a spinal tap, after initially refusing it. (scared to DEATH!) But my neurologist finessed me into it by asking "don't you want the question mark to go away?" about whether I had MS or not, so...I had the tap, it was as easy as having blood taken (exept that I took one Ativan and had to lay on my stomach) They took 7 tubes of fluid. I lay there and dozed for an hour, then got up slowly, drank a full 12 oz coke, stayed on the couch for the weekend after, at home, drinking lots of caffeine, and never had a headache or any problem.
(remember, the spinal tap needle is like, 2 times smaller than a blood needle or something. didn't feel a thing but the cold anesthetic) I listened to Dean Martin Italian music on my walkman and actually had a nice little rest. Don't be afraid!

And the tap showed what the MRI didn't, so that's how I got diagnosed. I recommend you go for it if you haven't already.

je 10-22-2002 01:52 AM

I had a flu or something going around (my girlfriend has it now!) but only I got the blury double vision. It was okay at the biginning, but a couple of days later it came back all day and I thought 'uh oh, ive seen this before', so I made (well, still trying) to make an appointment with the neurologist (stupid beaurocracy). The cold/flu is gone now but double vision is still there. Each eye sees well on its own, but I can't focus them together, and I'm really dizzy.

I thought it might be stress from the flu and trying to learn (not very well) some new stuff in grad school (6 years away, I forgot how to study). I can't do more than 20 minutes work without having to stop from the blury vision and headache. A short rest reduces both.

I tried, for 'fun', some of the extra prednisone I had left over from a couple years ago, and hoo-wah, 2 hours later I could see almost totally clearly again, so I guess I have an answer? I really can't study not to mention my regular life, with this problem.

veree 01-24-2003 05:11 PM

My 31 year old son lost sight in his left eye last week, went to an eye doctor today and is going for an MRI next week. Possible MS. I am really concerned about this and was wonderng how others are making out. Thank you

Chinacat1973 01-25-2003 10:25 AM

Thanks for the replies to my first post!

It is now Jan 2003, and I am 30 yrs old, the average age to be diagnoses w/MS, and I have not had any systoms of MS since the steriods via IV in June 2002 after having the optic neurtis, I did not go for the spinal tap, My neurologist said that it was not nessary because i hadnt experienced 2 or more systoms of MS, I only had the optic neutitis. So having taken the Steriods, (which is suposed to pro-long another bout of MS IF thats what it was) has surpressed it or maybe it wasnt MS, but My GP and neurologist say I might not have another bout for yrs to comes or months, thats the worst about this struggle, how long it can take to be actucally disgnosed. So to all that are going through this I wish you strenght and Hope!
and please repy I appreicate all replies.

Jeaneau 01-27-2003 09:03 PM

Chinacat, unfortunately, for most, getting an MS dx is a little like closing the barn door after the cow is out. Neither MRIs or spinal taps are always conclusive in showing MS in its initial stages. Some end up with a diagnosis after repeating these tests for many years. The whole while, MS screams from every pore in their bodies.

I am lucky, in a way I guess, as I was diagnosed long before the MRI was discovered, I managed to miss the purgetory of limboland.

Anyway, my first sign of MS was ON. Neither oral or IV steriods did a thing for it. I tried the roids again a bit later whan another round of ON hit, same result, no effect. Each time my MS flared, new parts of my body joined in on the outages. I tried more rounds of IV steriods many times my first 10 years after diagnosis without making a dent. As time went on, the flares began lasting longer too, some up 9 or more months at a time.

I think F-Man's advice is sound. If you can't (which I understand is impossible where you live) get an appointment with an MS specialist in Cananda, perhaps get to one in a US city nearest you. MS specialists are more proactive in getting to the bottom of it, ruling out other MS mimickers, and getting you on proper therapy before you endure further losses.

I know you will have to pay out of pocket to see a doc in the US, but it may be the best investment you've ever made. I accumulated years of permanent blindness and other problems long before the MS drugs were out. I don't think they were even on the drawing boards when I was diagnosed.

Chinacat1973 01-27-2003 09:48 PM

Thanks for your post Jeaneau.

It sounds like you have so much more knowledge on this than me Jeaneau. I really appreicate your comments and welcome more.

I am scared, maybe the ON isnt about MS, maybe the roids will prolong another bout if it is that and thats bad because it should be discovered asap for treatment reasons, but would I be jumping the gun to assume thats what it may be, I have read studies on research of the roids, the studies showed that some ON cases didnt turn into MS.

So is ON a commom illness?.....I have only heard of it when i was told i had it, and all medical encounters kept pointing to MS, except the neurologist,he would speak of it said i was jumping the gun to think it was that and there was no real way to tell for sure except getting lucky when doing the tap, but the whole reason I got to see HIM was because of the suspected MS....? so confuseing.

The ON has affected the sight in my right eye, but its minmal now the roids did bring it around or it did it itself. The difference i see is the eye see's darker than before and darker than the left, My eye sight is very very vaulable to me as it would be to anyone, if it is MS will I have my sight damaged till I find out, a scary risk..........

Its been almost 6 months and there isnt a day that goes by I dont think of it, sometimes I feel myself waiting for somethng to happen, I dont loose sleep over it, but I am totally aware of the chances of it.

So yes you are right Jeaneau, there are no MS doc's here in Atlantic Canada, and I would most likely have to go south to get speicalized care or even diagnoses. But I cant afford that at all so that wont be happening ever.

Is there a greater chance I dont have it, are there ON cases that dont lead to MS.. is that common. What I have read says 50/50.

looking forward to all replies
optomistic and realistic

[This message has been edited by Chinacat1973 (edited 01-27-2003).]

Jeaneau 01-27-2003 11:11 PM

Chinacat, you are right, ON is not reserved to MS only, however, your numbness and tingling combined with more than one ON attack makes it more suspect of MS. Too, I forgot to mention, before my first MS attack which was a severe ON attack in my right eye, I too felt flu like for about a month leading up to the ON. I was not a sickly type, but couldn't seem to shake that dragged down, not well feeling. A week before the ON set in, I'd tried to get out of a long business trip (unsucessfully by the way) that I had been looking forward to, but I was just not feeling up to it at all.

Since you are in a real bind, the clock is running on your eyesight loss, and the roids aren't working, you can still take steps to try to salvage what's left. In this case, the advice that Batman777 makes here regarding LDN is a good back-up plan. You wont' necessarily need to involve your doctors in getting it, but it is a good idea to if you can. Many of my MS friends take LDN alone with some success of slowing progression, many more use LDN in addition to Copaxone. I understand you do not have to get a prescription for LDN, the information for doing this is supposedly available on the website Batman mentions.

It is a harmless drug. Because so many I know use it, I tried if for about a year. I did notice some improvements, it made my exacerbations less intense and less damaging, although, I still had exacerbations. I am on Copaxone and find it to be more effective in all ways though. LDN shouldn't cause lesions from appearing on your MRI when you are ready to get a dx, as I had new lesions on my brain and spine a year after being on LDN. So it shouldn't hamper you getting a Dx when you feel you are ready to repeat the process. If you take LDN, and don't have MS, no harm done there either. I've not taken LDN for over a year now.

There's alot more, but I don' want to overwhelm you with info overload all at once. I am sure you have more questions (such as some things used successfully for reducing/eliminating ON attacks), so please feel free to ask them. I will tell you what I know or know from other MSers about various things.

galad 03-13-2003 07:10 AM

hi Chinacat,
I got optic neuritis in both eyes last Dec. It started with a grey 'spot'in the worst affected eye, and photophobia a few weeks before the acute phase started.
had an MRI and spinal tape to look for MS, tumour or ppseudo tumour plus test spinal fluid for other diseases. All came back negative. the doctor says they do not think i have MS. My vision is pretty good now, light and colour has come back and the flaring has gone. my eyes feel a bit strained and like you, one is a bit dimmer than the other with the colour a bit 'colder'. Not much difference though anymore. I can sympathise with you, I think about it all the time aand am in terror of another bout.

Chinacat1973 03-13-2003 10:34 AM

Thank you Galad for your post.

I cant imagine having ON in both eyes. That must have been scary. You are so much braver than I, I did not go for the spinal tap.
I do agree that it is scary, not knowing!
My eye is not completely back to normal and the doc said thats what could happen, but it is definitly noticeable to me, having one eye not as sharp in color, it seemed to go back to normal but I realize now (maybe with more sun as spring is coming to Canada)
that there is a major difference, the eye doc says that there is no vision problems but to me I see differently.
Its ALWAYS on my mind, I dont live a life of fear about it, but I am concious of the possibilites of having MS.
I have been searching for more Info about ON, I havent been that sucessful. So if anyone can pass on links to info about ON please please do!
I would like to know your age Galad....and If you seen a MS doc or general doc....
thanks again for your post, its nice to talk to people with common concerns.
looking forward your posts

galad 03-14-2003 11:59 AM

Hi Chinacat
I'm 40. I'm from Canada originally too, although I have lived in the UK for over 10 years now. It WAS scary getting the ON in both eyes, I honestly though i was going blind, esp. when the dimming effect started. I went to go into a shop and thought it was closed with the lights down--but they were on. I went in and started looked at books on the shelves and the lettering on the spines flashed light and dark. The lights in my hall faded from yellow-white to dark amber and everything outside had a blue tint, even the clouds and people's face, which lookked weird, faded, and drawn, almost wraith like. It was like twilight all day.
The one saving grace was that, for some reason, my visual field wasn't too bad! I could kind of see through the bluish haze, I did'nt have completely blind spots like some folk get. It was weird too when my vision started returning--you know how a lightbulb flickers before it burns out/ It was like that in reverse; there was flickerS of light and all of a sudden the room got brighter!
I have seen the head consultant in the eye department who was consulting with the neurologists all along the way. i have an appointment later on with a neurologist but don't know the date yet; obviously he does not think it all that urgent! The doc was worried most about compression from a tumour or pseudo tumour (too much spinal fluid) 9he thought that might be why both eyes were affected) but the MRI/spinal taps were neg. for that as well as for MS. The spinal tap was pretty unpleasant, agreed, not at the time (I felt nothing when it was being done)0 but I had the headache for a week and my back around where she put in the needle was terribly stiff and sore for weeks (I have a bad back anyway which I suppose didn't help.)it did put my mind at rest somewhat having it done though.

je 05-09-2004 05:34 PM

I'm wondering too. What happened?

californiasunflower 05-11-2004 02:50 AM

FYI, one of the other conditions that can be the cause of ON is lupus. Lupus also can cause brain lesions. Also, it can cause flu-like symptoms, particularly after sun exposure.

What is LDN?

Jewel2 05-11-2004 06:20 AM

Cal Sun,
I'm answering your question about LDN in a new thread by that name.

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