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MS event

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Old 07-30-2005, 05:51 AM   #1
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katri0311 HB User
MS event

Hi. I have posted here a couple times, but I wanted to see if anyone has experienced something similar. I have had double vision for almost 1 year now. After going to countless doctors, one neuro opthamologist repeated the brain mri and I do have one leision on the brainstem which is causing all of this. Even with the other symptoms,(left side weakeness, some tremor) she said that I can not be diagnosed with MS until I have another "MS event" which will effect another part of the nervous system. The double vision will never change, but I have prisms in glasses that are helping some.
Have any of you had a clinically isolated event or been diagnosed with clinical isolated syndrome? I understand that sometimes you will go on to be diagnosed with MS and there are other cases where that is the only event that happens.
I would be really interested in talking with someone who may be going through this same thing. I am not on any medication yet. I will see her again in Dec.
Thanks and hope to hear from someone soon

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Old 07-30-2005, 06:10 AM   #2
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beachlover247 HB User
Re: MS event

Hi Katri,

Oh Lord, I pray my double vision doesn't last a year!! It drives you crazy, right?
From everything I've read double vision is a huge red flag for MS. That's how mine started in '93. Went through ALL the tests and they said probable ms is you have another attack. Sound familiar? They put me on oral dosepack of steroids and vision cleared. A few months later i had trouble with my leg dragging and fatigue. Another dose pack (gosh I hate that stuff!!), but it worked. I have gone10-11 years with NO problems and no meds. A month ago, there go the eyes and multiple other problems I've never had before. New neuro, MRIs and doc put me on iv solumedrol and started Avonex yesterday. I'm praying vision clears. If not, guess I'll have to get the prisms. Do they really help? I'm supposed to go back to work soon and the way it is now, there's no way. I work in the schools as a speech therapist. They would be the ones helping me instead of the other way around!! Hope this helps in some way.....Have they not tried any meds like steroids????"

Old 07-30-2005, 07:49 AM   #3
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marion06095 HB User
Re: MS event

I have had double vision all my life. I also believe that I have had MS if not all my life, then from a very early age. I really feel sorry for folks that get double vision after having regular sight all their lives. I, of course, have gotten totally used to seeing double. Actually, I really should say I have gotten used to being able to turn off (with my brain) which ever image I don't want to be seeing. But I can see both if I want to. When driving, I can look straight ahead at the road, AND in the rear view mirror at the same time. Since I have always been this way, it is just normal to me. If (when?) I get diagnosed with MS, and I take the steroids, I wonder if I'll stop seeing double. Now THAT will be as strange for me as seeing double is for you!

Old 07-30-2005, 09:41 AM   #4
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katri0311 HB User
Re: MS event

Hi, Thanks for both of your posts. The double vision does get really hard sometimes. With mine I can look straight and see ok, but if I barely turn my eyes to the left then everything is doubled. They called it internuclear opthamoliga and I also have nyastigmus. With the prisms, I still see double when I look to the left, but it is a little better. I think maybe it controls the nyastigmus more I don't know. I didn't think they were working at first, but they told me to not wear them for a day and I couldn't hardly see at all! There was an improvment when I put them back on. I know double vision is a clear sign of MS and because they have ruled out everything else. But I haven't gotten a diagnosis of it yet. The other symptoms have been numbness and tingling, left side weakeness, tremors on left side, occasional pain, some dizziness, and just feeling strange. Clumbsy too, but have been that way all my life! The first neuro opthamologist said that prisms wouldn't help at all, but I have seen another doctor who wanted to try them. You could try them and see if they help you even if its a little. Is your visions doubled when you look straight all the time? If it is my goodness that would be so hard. And if you, Marion have had this all of your life that must be terrible! I did have steroid eye drops when this first started ( Aug 04) but they didn't help. Evidently they don't think it will help now. One doc said that because I am 42 thats a little old to have MS, but I am thinking it started a long time ago as I think about way I have been over the years. Do either of you have brain leisons? I would be interested in hearing about that. It is nice to finally talk to someone with the same problems. I was beginning to think I was crazy! Thank you both and hope to hear from you again soon. Katri

Old 08-03-2005, 08:16 AM   #5
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Re: MS event

I went 13 years before the second "event" that made the dx possible. Some people even go 40 years without an exacerbation! That doesn't mean they don't have MS, though.

Old 08-04-2005, 01:09 AM   #6
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melaus HB User
Cool Re: MS event

Hi...don't go mad....there is hope. I had vision problems when I was dx in 97 in my left eye. After about 8 months it started to clear and slowly got better and better over the next 2 years. Now I only have problems when my body temp. goes soon as I get hot I go I cool myself down as quick as I can before anything else happens...

Good luck and stay well......

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