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Avatar universal

Do I really have ms??

Has anyone been diagnosed with ms and not had any symptoms or flares???  I am new here.  My Neuro DX me in Feb of this year.  I went to er for a weird sensory thing with my eyes which only lasted 30 minutes( not 24 hours or more).  They did an mri which showed 8 plaques?  Had to follow up with neuro. DId lp (horrible, needed blood patch) elevated IgG index should have been less than .85 mine was.94. So this is all he went on ( evoked potential normal) all other testing lyme etc negative...really without an attack???  I feel fine except some random twitching with has been happening since I was DX..maybe I had it before DX..I don't know. the twitching worries me, but seems to subsided somewhat.  Can I really have it w/ out an attack or am I waiting for the big ONE?  By the way my visit to er turned out to be optical migraine...totally unrelated to what was found on mri?  I am on Copaxone...but what if it's not ms and I'm on this med?  PLEASE HELP?
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Avatar universal
Yes he said it is "CLASSIC" ms.  I had perventricular, corpus collusom, corona radiata, adn lesion on the left thalamic and semiovale and the paraocciptal area whatever that mean...I guessing the eyes maybe.  It was noted they were small punctuate lesions accept there was one bigger one.  So I don't know.  I don't typically get migraines.  Still wondering but still shooting the meds.
Helpful - 0
807129 tn?1245273527
Hi, there!  I second the second opinion.  

I do believe there are other members here who had similar situations...had an MRI for an unrelated reason and the MRI revealed MS lesions, without them ever having an "attack".  

If the second opinion results in the same conclusion, it could be a blessing, having a diagnosis so early, because the medicine could prevent further damage.  Studies have showed that being on a DMD so early on will slow the disease progression.

I was in kind of an opposite situation, where I had mild symptoms and had multiple lesions on the MRI, but they wouldn't diagnosis me because I hadn't had any clear attacks and my other tests (LP, VEP) were normal.  I knew that I could have MS and that it could just be in the early stages, as my symptoms were minor.  But I also know that MS can cause damage silently.  

After getting a second opinion, I now have a diagnosis of Clinically Isolated Syndrome, because the 2nd neuro saw more on my MRI, and I have the go-ahead to take Copaxone, which I will probably do.  I'd rather risk taking the medicine for something I might not have in order to prevent major damage in the event that I am just in the early stages of MS.

Did the doctor say that the lesions they found on your MRI were typical for MS?  That was one of my hold-ups, that the lesions were not in the typical location for MS and that they could be from migraines.  I just mention that since you said that your optical problem turned out to be a migraine.  
Helpful - 0
429700 tn?1308007823
Hi Karen--

I want to recommend that you post everything after your first sentence again with a different thread by going back to the home page for MS Community and hitting the green button that says "Post a Question".  You probably would want to copy everything after the first sentence in this post first, so you don't have to retype it.  That way, your questions won't be overlooked because they are in a different heading.
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Avatar universal
Hi, wondering something. What kind of symptoms eye symptoms did you have?
Also to everyone: is it possible to have something happen twice around 20 years ago, it be MS but never happen again? This is what I mean: I had a feeling like really weak like I was gonna passout in my 20's. This happened twice and also I felt weak on one side so i thought I was going to have a stroke. Iwas in college and by the time I could get to the campus medical center, it was gone. That was maybe a span of 15-30 minutes including onset, diminishing enough so I can walk and getting to medical center.
Helpful - 0
667078 tn?1316000935
I have never had any dramatic attacks. My MS was caught by my PCP when she did my yearly exam in 2007.  She then sent me to a neurologist. All the tests came back strongly for MS but they took two years to start me on Copaxone. They wanted to see something dramatic like me going blind or not being able to walk. In April my LP had 12 o-bands so they figured they could no longer wait. I wish they had started me on Copaxone two years ago. My disease is progressing more rapidly.

MS progresses with out symptoms that is why I have to take Copaxone everyday.

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Avatar universal
Wow, thanks for all the great input and suggestions everyone.  I really appreciate it.

Jen
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429700 tn?1308007823
Welcome!  I'm glad that you found this forum and hope to hear from you lots . . .
I think what was said is right on--the Copaxone won't cause your body any problems (except for the injection site reactions).  It's a good medicine to be on to help prevent further attacks.  Also, seeing an MS specialist or another neurologist for a second opinion wouldn't be a bad idea either.  Perhaps you'll feel more at peace.  Occasionally, I will even feel a little doubt about my diagnosis when I'm feeling alright.  It's part of the acceptance phase.  However, knowing this shouldn't stop you from that second opinion . . .

I'd also request for your medical records.  It will reveal quite a bit.  Perhaps something was seen in your neuro exam that wasn't mentioned to you.  

After looking over your symptoms, I can see how your neuro came up with two seperate attacks-- your neuro may have seen evidence of some inflammation of the optic nerve.  For some people, the symptoms are very mild.  You may have had optic neuritis and didn't know it.  Sometimes the symptom may be as mild as faded color of red in one eye without pain.  This symptom is not all that noticeable.  I remember when I had ON.  Sometimes the color saturation problem was really evident or sometimes I wouldn't notice it unless I covered one eye and compared it with the other when looking at red objects.  So, perhaps you've had ON for longer than that 30 minute time period when you went to the ER.  

The twitching is another symptom of a different kind of attack.  You have 8 lesions (plus the one on the optic nerve).  Right now they are located in places in your brain that isn't causing obvious symptoms.  However, if your disease progresses, you risk future of future lesions and with that more serious disability (it doesn't always stick--often times it remits).  It doesn't always happen that way because MS is so unpredictable.  With the Copaxone, you may not have any more problems at all.  More often, however, the medicine will just slow down the attacks.

Best of wishes,
Deb  
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Avatar universal
Hi there
I just want to say 2 things, firstly that I am so sorry you are going through this, many of us have years of symptoms before getting a diagnosis, it must have been a complete shock to be diagnosed like this when you didn't have any idea that MS was a possibility. I don't know how I would have coped.

Secondly, I'm definitely no expert so get lots more advice and information please but maybe if you have had no symptoms or flares the copaxone could stop you ever getting any. Just a thought...

Good luck and I hope you find some clearer answers.

Mand
Helpful - 0
984138 tn?1359813073
I would def. get a second opinion! Mine was pretty clear had the attack numb limbs wobbly walking headaches pain everywhere and had one mri that had lesions and they knew what it was real fast and i kinda figured it out myself...But i definalty would not take that medicine without a second opinion when i never had an attack or anything regardless if its not bad for your body! So yeah try out someone new  a second opinion never hurts  even a third or fourth!
Helpful - 0
Avatar universal
Welcome to our MS forum. You've come to a good place where we tangle with issues like yours quite a bit.

Your immediate question is about taking Copaxone if you don't have MS. The short answer to that is that it won't hurt you. No damage whatever will be done to your body. That having been said, though, you may be paying out of pocket (yikes), or you may experience difficult side effects from copaxone. These factors could make a difference for you.

It's surprising how many cases of MS are diagnosed more or less by accident. That does make things harder to accept. In your place I'd take all my test reports to a different MS specialist for a second opinion, while fully expecting confirmation of MS.

Please take some time to look at our Helath Pages (upper right) where you'll find a great deal of accurate information. And again, welcome.

ess
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