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  • Hi all, apparently have been dx with mild ms

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    Old 07-30-2008, 02:33 PM   #1
    RunMonkeyRun
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    Hi all, apparently have been dx with mild ms

    My story, had ON May 2002, was having some pain in my left eye, moving it around bothered my but the pain was nothing I couldn't handle, so after 4-5 days I decided to see my eye doctor as he helped me when I had a partical go in my left eye 6-8 months prior to seeing him. I saw him on a Thursday and said he couldn't see anything wrong in my eye but wanted me to come in Friday to do a visual field test. He wasn't going to be their so he would let me know the results later on the day, well I woke up in the morning it was like I was a little foggy seeing out of my left eye, so went did my visual field test and was told my visual field is off, then eye doc calls me from his meetings and tells me that he is makeing an appointment to see a specialist for Monday or Tuesday and that if I have any further pain to go to the emerg at a hospital and tell them I may have retrobulbar optic nueritis, uhggg, what the hell, what could be so wrong that I would have to go to the hospital, he didn't want to say to frighten me, eyesight got worse to the point everything was getting fuggier and painful but still bearable.

    Ya went to the hospital Sunday afternoon only to sit there for 4hrs in emerg to twittle my thumbs, one guy came from playing soccer and dislocated his finger or thumb can't remember, anyhow I went to triage and said well how long before I get threw the doors to see a doc, couple of hours she said, unbeleivable put that guy with this dislocated thumb in my place, she says why! don't you want to wait, I aske her is their an eye specialist or anyone that knows about my possible eye condition, she says no, well if I am going to go blind I might as well be at home compfortable than sitting here wasting my time then.

    I see the eye specialtist with my wife and the guy starts telling me about possible ms while we do some eye test, the only thing I coud see were colours and everything else was a fog. He sends meto a NeuroOpthamologist who had a special interest in ON. I see him and he sets me up to have steroids intervenusly done at home for 3 days and start taking pills after that, I asked him if I started working out again while on the roids would get muscular faster, joking of course never done that. He made an appointment for to do the evoke test (I think thats what its called)and everything was fine but my left eye. Needless to say I was freaked out already with this whole ms scare, not really knowing anything about it thinking what is going to happen to me, I just had my son (well not me the wife) and my daughter was 2 at the time, everything went threw my head from death to being blind to parilized to my marriage, everthing.

    I started seein good in a couple weeks had my mri appointment for end of July and thanks to my buddy, his dad calls me and says when I call you can you come rightaway, well ya, sure enough he calls me the Monday a week after all this crap going on and had my mri done before the Neuro came back from vacation, I knew what the anwser was before he came back, no leasions or anything abnormal, well I was feeling pretty good that day!!! I see the neuro for the results and do more eye test, telling me it is possible that I may not get full eyesight back, meaning I may not have 20/20 vision, but all was well had 20/20 vision and he says that I am 1 in a million and do not have ms.


    March 2007

    Possible problem - expeirenced a little tingling and numbness for a week or 2, with my right leg and upper thigh felt like I had heater on it, didn't go to family doc. has never come back.

    Possible problem - terrible ich and pain in left arm to the point of taking skin off, didn't sleep for 2 months its was so bad went to see my doc, he wasn't sure except that it might be neuro dermititis because it effected the nerves down to my forearm. Sends me to a neuro I wish it was the one I delt with before cause the goof he sent me to I wanted to punch him, shity attitude.
    It has been going on a 5 months at this point and finally had mri of the neck area and found a lesion and since then had another mri of the brain which shows about 8 lesions. Not happy. but right off the bat the lesion I had on my spine hey you have ms. Sent me to the ms clinic January 3rd 2008 and well I have been dx with mild ms, well happy new year. What a hum dinger, but the problem with my arm isn't ms apperently but since I have been taking a stronger cortisone and Panetan cream it is much better. I sleep better now and sometimes I slap the ice on it and it helps cool it down when the skin getts really red and irritating and blister like. I was pretty angry for awhile.

    Totally weird cause threw all of this no blood work was done till I told my family doc to test for anything that mimics ms otherwise I wouldn't know if I have some other issues that can mimic ms and the neuro at the ms clinic never even suggest blood work and when I asked about the spinal tap she said even if it came back negative it wouldn't change her dx. Mind you she never pushed me for to do the meds it was my choice but if she felt that I had to she would say so. My next mri is in September hoping that there is no new lesions, and praying that they are meraculesly gone. I know wishfull thinking.

    I haven't really told anyone except my parents and brother or even spoke of this since. I have been a healthy guy my whole life, sick very rarely I mean rarely, always in good health, I never see my family doc much and even know. When I read all the post and problems that everyone is having or had I say how could this be ms with me, but it does effect everyone differently. Nothing even in my family history has ms and all are in good health.

    Sorry if I bored anyone cause I think I bored myself lol, thats my story for know and sticking to it.

     
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    Old 07-30-2008, 03:11 PM   #2
    Bearygood
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    Re: Hi all, apparently have been dx with mild ms

    Hi, RunMonkeyRun, and welcome. My story is very similar to yours -- and it was my left eye too! Ophthalmologist sent me to a neuro-ophthalmologist but in my case, lesions on the brain were found. From there I went on to see an MS specialist -- I had a dx of MS in less than two weeks.

    So you know, it can take quite a long time to see if vision will return or how well. Your doctor did the exact correct protocol for ON -- IV steroids followed by oral. This is very important and I have seen others whose doctors prescribe oral steroids only, which is NOT recommended. I did NOT do steroids at all when I had ON but my recovery is almost 100%. Even over a year later I was still experiencing improvement. It generally goes as it came -- color is the last to go and the last thing to return. I still sometimes get a little pressure or blur when going from one temperature to another but it's not often and my color loss is minimal. I'm not even aware of it on a day-to-day basis but if I look at red or green out of each eye individually I will see a slight difference. The key for prognosis is the health of the optic nerve itself -- your neuro-ophthalmologist may have talked to you about your situation. Despite the inflammation and resulting visual impairment, my optic nerve was thankfully in good shape.

    The thing I don't understand about your story is your title where you say you've been dxed with MS. That would be very unusual based solely on a case of ON. That said, ON IS very closely associated with MS and although it CAN be caused by other things, is suspicious for developing MS if no other underlying cause can be found. It would be helpful for you to research the Optic Neuritis Treatment Trials aka ONTT, which will include some of what I've said here. There are some threads about it on the board as well so you can try using the search function.

    BTW, I have had sx throughout the years that I guess could be attributed to MS but there is just no way to know for sure. It was nothing that I couldn't (or didn't) ignore and I did. That is, until I went to the eye doctor! I thought I'd be walking out with eye drops, not a referral to a neuro-opthalmologist!

    I hope this was helpful and we're happy to answer any questions.
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    Old 07-30-2008, 03:15 PM   #3
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    Re: Hi all, apparently have been dx with mild ms

    I just read your post again -- sorry, I didn't catch that your ON was in 2002. So what you're saying that they told you at the time you didn't have MS and since the sx and the follow-up MRIs lesions were found. Think I got it now! How is your vision now from the bout with ON?

    Sorry, I didn't follow but it might just be that I got about 2 hours of sleep!!
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    Last edited by Bearygood; 07-30-2008 at 04:13 PM.

     
    Old 07-30-2008, 04:22 PM   #4
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    Re: Hi all, apparently have been dx with mild ms

    Thank you for your story, it didn't bore me! "Mild" MS is a controversial thing, it may just mean that your disease is progressing very slowly, which is a good thing. Welcome to the board, and feel free to vent or ask questions! It must be difficult when you're not talking to anyone about it. You're not alone though!
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    Old 07-30-2008, 04:49 PM   #5
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    Re: Hi all, apparently have been dx with mild ms

    Another Canuck! Hugs my friend! Welcome to the family!

    I have to agree with April. "Mild" MS is a controversial term. If this means slow progression let out a big woot!

    And your story was not boring. It was a good read!
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    Old 07-30-2008, 09:54 PM   #6
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    Re: Hi all, apparently have been dx with mild ms

    Quote:
    Originally Posted by RunMonkeyRun View Post
    but the problem with my arm isn't ms apperently but since I have been taking a stronger cortisone and Panetan cream it is much better. I sleep better now and sometimes I slap the ice on it and it helps cool it down when the skin getts really red and irritating and blister like. I was pretty angry for awhile.

    Hello RunMonkeyRun.

    I'm not sure who told you the itching isn't MS but, I am going to disagree. The itching could very possibly be caused by your MS. There are some who have the same problem your describing, to the point they bleed from the amount of scratching they do.

    At least you have the itching under control.

    I have been termed "mild." I have to tell you even mild MS is far from a cake walk. One thing to remember - your only mild until your not.

     
    Old 07-30-2008, 11:21 PM   #7
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    Re: Hi all, apparently have been dx with mild ms

    Hi and Welcome,
    Your story was far from boring. you might not talk to family or friends but we're sure here for you.

     
    Old 07-31-2008, 07:06 AM   #8
    RunMonkeyRun
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    Re: Hi all, apparently have been dx with mild ms

    Well it was my neuro at the msclinic who said it was most likely not the ms, because its not just the ich and pain, also sensitive to the touch. Clothing is the worst or was the worst, I could not wear sweaters or long armed shirts cause it felt like it was a bunch of fragment pieces of glass under my skin and when I touched or a sweater would rub up against my forearm I would clinch my teeth cause it would hurt like a son of a gun, I would have to shift my are in away that the sweater would not touch.

    Thanks for all your words, its nice to know there is other people to help support you when you don't think you have a place to turn too. I shouldn't really complain as I have read some unhappy stories and this is what I have to realize as I am still good, my evoked potentals came back normal in March 2008 the same as when I did the first one in 2002.

    Well hope everyone is doing good!!

     
    Old 07-31-2008, 08:09 AM   #9
    Snoopy61
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    Re: Hi all, apparently have been dx with mild ms

    Quote:
    Originally Posted by RunMonkeyRun View Post
    Well it was my neuro at the msclinic who said it was most likely not the ms, because its not just the ich and pain, also sensitive to the touch. Clothing is the worst or was the worst, I could not wear sweaters or long armed shirts cause it felt like it was a bunch of fragment pieces of glass under my skin and when I touched or a sweater would rub up against my forearm I would clinch my teeth cause it would hurt like a son of a gun, I would have to shift my are in away that the sweater would not touch.
    I am going to tell you the skin sensitivity IS your MS. I can't tell you how many people deal with the pain of clothes, sheets, blankets or even a simple touch can bother them and can be quite painful.

    I have experienced skin sensitivity more times than I can count and even my neuro knows it's the MS. I have been in tears just trying to get socks and shoes on. A sheet touching me can cause the same reaction and at those times if I could go naked I would.

    I don't care if your neuro is at the MS clinic, he doesn't understand MS.

    Sorry, I think I just had a small rant but it makes me angry when those with MS are given wrong information and it's coming from someone who should know something about the disease they are treating.

     
    Old 07-31-2008, 08:27 AM   #10
    RunMonkeyRun
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    Re: Hi all, apparently have been dx with mild ms

    Its been going on for a over a year now but has improved quit a bit since, the first year was very hard, my family doc seems to think is is neuro dermititis.

    Because of having this probablem is what has brougth on the mri test of my spine and one thing led to another, otherwise I would not have known I had lesions.

    Even when I get goose bumps its more of a noticeable feeling then rest of my body. I know it is very frustrateing at times but so far its about 10times better. I always slept on my left side but know have gotten used to sleeping on my right.

    I haven't ruled it out to be ms, just the length of time its been. It is the only thing that has driven me nuts but my stress level has been pretty high for awhile and am starting to learn that there is more important things in life than work!

     
    Old 07-31-2008, 08:47 AM   #11
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    Re: Hi all, apparently have been dx with mild ms

    RunMonkeyRun,

    I can see how the itch might not be MS ( I went and read about neuro dermititas, something I should have done to begin with)

    I started to do what I know I shouldn't - blame everything on MS. There can be other causes. It could also be the MS.

     
    Old 07-31-2008, 09:32 AM   #12
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    Re: Hi all, apparently have been dx with mild ms

    Snoopy61,

    I understand why it is very hard to get dx with MS now, in my situation I found it very hard to beleive because by the time I went to the MS clinic, no blood test were even spoken about, no LP, no nothing only basis of me having ms was based on my mri of the spine and history of ON which showed no lesions then and 1 now. So I thought they were all full of crap but the brain mri showed lesions in December 2007, ya merry christmas.

    I understand the frustration involved and anger cause I have gone threw them and still am. But hopefully it will stay the way it is but not getting my hopes up!

     
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