Multiple Sclerosis (MS) Support Group

I'm sorry about your symptons. Have you done any tests? I would think and hope that at least you had an MRI. I was just dx in august but I had the same problem with my left eye for a couple of years. Maybe you should get another opinion. Either way good luck on your decision.

Your post is somewhat confusing. You had ON and double vision, and on those two symptoms alone you were told you might have MS and you should start a med for it?

You had no other testing, an MRI or anything like that? In this day and age? I had ON in 1985 and then MRI's didn't exist and I was told the same thing. It was 19 years later that I actually got diagnosed but MRI's were available and I got one. I was 23 then and ON in the early 20's has the best prognosis that there is. I wasn't diagnosed for 19 years, so obviously it was a pretty good prognisis.

I had MRIs done, but it doesn't show much, any lessions. My ophthomologist is not fully convinced that I should be on meds, but adviced me to have MRI every six months. That's why I don't know what to do.

Your ophthalmologist advice sounds very wise. are you able to get MRI's every 6 months? Is it a neurologist who is reco9mmending that you start an MS med now? There was so much more I wanted to write last night but I was going to a movie and had to leave.

When I was diagnosed with MS, it was based upon 1 MRI in an ER that was taken because of suspected stroke or MS. So those 19 years took a toll, my MRI said extensive damage from MS. The neuro who was assigned to me at the hospital advised me to start a med. I reused for 8 months, because I was attending school at the time in the last semester. I wanted to complete that before I started a med that had side affects that might disrupt my last semester...

So there is no hurry to start. You have time to be certain it is what you need. I am surprised you are being advised to start a med when there are so many other people who are unable to get a diagnosis and are frustrated at that.

In those 8 months I was going to school without meds, I meet a woman who had an episode of TM when she was in her 20's. WE were both the same age. TM is she woke one day and her legs were paralized and she wasn't able to use them...it happened to her befor MRI were available also. But she was diagnosed with MS based upon the incident. She applied for and went on disability.

But had no further incidents, no lesion on an MRI and she was 41 too.
When I was going against my doc's advise, she would tel me the same thing you wrote..."once you start a med you have to stay on it forever" She has a 2nd opinion at mayo and they advised her not to start a med.

My delaying meds set me into a year of frequent relapses that didn't stop(slow down) until I started a MS med...I don't think she ever has MS and that is why Mayo advised her not to start.

60% of leg issues will eventually result in MS, 40% wont. It will have be found to have been caused by something else or a cause will never be found, an 'idiopathic' symptom". For some unknown reason the nerves go haywire then resolve.

35% of ON is the same. 35% on ON will eventually result in MS. 65% will not. It will be from something else or a cause will never be found. An OPTHOMALOGIST advising you to take a watchful waiting stance is not something I would disregard. He did not advise you to ignore it...he advised you to watch it for now.

MS changes. It progresses. If it is MS, it should change over time.

And that woman who told me she wasn't on a med because once a person starts the med, they have to take it forever. I thought I could avoid having to take a med for the rest of my life by just not starting it. I thought the act of starting it was what was gonna cause me to need it for the rest of my life. It's the MS that's incurable. I'm gonna have MS for the rest of my life. I will need 'A ms med' for the rest of my life to treat the MS I will have for the rest of my life.So when you wrote it it touched of a dilmema I had for the first 8 months.

Have you told your neuro, what you opthamalogist has advised?

I meet a woman on the board who had a sudden episode of total loss of vision..she when blind. She was diagnosed in the hospital also. The neuro diasgnosed MS and started her on copaxone. The opthamologist she saw did not think it was MS, he thought it was something but not MS....

In frustration she went to the mayo clinic, for a 1 day review of her diagnosis. No tests, her insurance company would not pay for any tests at mayo. Her neuro had to write an order for a 2nd opinion at mayo. A credible neuro will not mind a oerson going for a second opinion. And HER neuro was an Associate Professor of neurology at a school of medicine.

He wrote the order for a second opinion. She went ther for a single day. Drove about 500 hundred miles for the appointment and then drove home in the evening. Well her father drove.

At mayo they reviewed her records, said they were 95% sure she had MS & advised her to get some cognitive testing done at home in the future.

She went back to her neuro & said that mayo had told her it was 95% certain she had MS. That she had just gone for the second opinion because of the conflicting opinion of the opthamologist.

She wrote, her neuro said with a twinkle in his eye "If they are 95% certain it is MS, I'm 99% certain its MS"
and told her that it is understandable that the neuro would have a different diagnosis because he does not have all the records of the tests that were done, so he doesn't have a complete picture.

My advise to you is get a 2nd opinion, I & the opto do not have a complete picture. I put off meds for 8 months after I was told to start, had very active disease during that time, it settled after I started the med,it didn't kill me, but I was certain it was MS after that!
She started the meds but went for a second opinion at the same time. So you have options if your uncertain of the med. A "watchful waiting period" without meds---I don't in anyway advise you to ignore it..but routine MRI sounds like a "pragmatic middle". Or start and go for a 2nd opinion at the same time.

How far apart were your two episodes? Did you have ANY symptoms that could have been MS before this? Anything you attributed to working too hard or something like that?

Because you don't have lesions on an MRI does not mean that it is not MS. It could be MS without lesions showing on an MRI----its just very unusual for neuros to diagnose MS without lesions on the MRI. Its more normal for a person to say "I'm sure its MS it's he won't diagnose it" very frustrated.

With your going the other way with no lesions makes me think there is more to the picture than you wrote.

How far apart were your two episodes?

Oh yeah the woman who had the episode of TM was unable to use her legs for a while. But their use returned, she was left with a limp. Which can happen in idiopathic TM- when it happens for a reason unknown.

This site lists famous people with MS, if you scoll down to the bottom it lists people who had "MS"scares. But it did not turn out to be MS.

http://www.mult-sclerosis.org/famo...

Good Luck. Let us know how it turns out. Thanks. Lynn

Thank you so much, Lynn for your feedback. My first episode was double vision, in two years or three I had ON. It's three years after that, after my neuro said: 'if I were you I should star medication', while Ophthomalogist said I should wait, keep it under control. I am seeing the Ophth after two weeks, have another MRI. My neuro will be available in April, so I schedule app. with another neuro in March, I couldn't find an earlier app than that. Isn't that terrible??The reason I want to see him is that, I am having some problems with my right hand, my arm is hurting up at the shoulder and I also have pins and needles time after time in my palm, esp. when typing in the computer. I am so afraid to start med, but what can you do. Can you believe it, I have to wait til March to see the neuro?? But at least I was able to schedule with my ophtho and let's see what the MRI going to show this time. Thanks again,
Alma

Sad 4 U... I am over 21 years with MS. I still walk but not well. I do use a scotter or a cane. Every day I work out at the local gym. I go at my pace and equipment I want. My trainer worked with me just once . If I am hot I rest. If I do not feel good I go home. Every day in the AM I take my viitamin pack from GNC. I do my stretch exercise at home. I am 64 and still kicking. I have been on the Swank MS diet since my DX 21 years ago. Think I am PP but who cares. Lou

admira hi im dennis nice to meet you first of all diagnosis of ms can only be done mri or spinal tap spinal tap isnt practiced much the docs dont like doin it for the patients sake but get an mri and get the dvd or films wichever you can get and get as many opinions as u can ms is in your brain and spinal cord the symptoms r very different and the medacine isnt really that big of a deal its just expensive none of them are 100 percent they are theraputic purposes they protect the good cells from the bad just do ur homework and ask the radiologist where u can get your x rays god bless sounds like you have a beautifulfamily