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Old 08-28-2007, 04:54 AM   #1
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another exacerbation question (sorry)

Throughout an exacerbation do all the symtoms/problems stay the same or can they spread/change?

Sorry for the many questions, I am having an extremely difficult time dealing with my problems...ugh...(in fact in the process of making a psych appt)
After my 5 days of steroids I am feeling so much better - that was two weeks ago. I thought I was well on my way, except for some residual issues that come and go....However, this entire time I've had blurry vision, even during the steroid thing and now I have developed ON in my right eye (which I've never had before). I'm scared that means it's going to get worse again, or maybe it's been developing the whole time (since my vision has been crappy for awhile)....ugh...I dunno....

Any words of wisdom? I need some right now...
Thanks for listening!
Rachel

 
Old 08-28-2007, 05:15 AM   #2
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Re: another exacerbation question (sorry)

Rachel... don't apologize for asking questions... that is one of the reasons for this board. I can say during the relapses I have had, the issues did change. I knew when it was coming by the escalation in the tingling and then the spasticity would get worse, then better then new things, then gone. The relapses were very different from each other. I have not had significant vision problems. Maybe others can speak to that.

Keep asking questions Rachel. Respectfully demand answers. Keep asking drs. until you get answers.

Good luck and don't hesitate to talk to all of us and ask as many questions as you need.

Lisa

 
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Old 08-28-2007, 10:54 AM   #3
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Re: another exacerbation question (sorry)

Don't ever worry about asking a question. I have learned so much by others questions or felt relieved that I am not the only one having the problem. Symptoms can worsen or change during an exacerbation.
Candy

 
Old 08-28-2007, 12:36 PM   #4
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Re: another exacerbation question (sorry)

I agree Rachel, first ask away, that IS why we are here..and second, I agree with the resonses you have gotten. Symtoms can change completely, or get worse with excaberations. Theres two things I want to ask you- one, have you seen an opthamologist to verify that you are experincing ON? ITs not always vision changes with ON, but it can be quite painful...if you havent verified thats what it is, go see an opthamologist immediately...and two, is it possible that you are having steroid withdraw? If you dont know what that is, its a very real issue of coming off the steroids, and it usually takes from 3 day to 2 weeks to start happening. You just start feeling better from the drugs, when your body comes off them and has withdraw from them. You really do go downhill again. It takes about a week afterwards for your body to start adjusting to the withdraw and start feeling better again. there is hope!
I hope you DO start to feel better soon. Keep us posted.
Nikki
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Old 08-28-2007, 02:24 PM   #5
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Re: another exacerbation question (sorry)

Thanks for all the responses!!!!
Yes, pain ugh in the eye it sucks. The only reason I think it's ON is because
I have had it twice in my left eye and it felt the same way. (Started with a headache and blurry vision, then became painful with movement and less blurry.)

The steroid withdraw is quite a possibility, interesting - people (meaning docs) should warn you about these things. I had 5 days of ending on the 17th and felt great last week. However this week is another story - not that things are going completely bad, I just don't feel as good (eye pain and throat issues). And of course, my anxiety over all of this is TOTALLY NOT helping... This week I just feel really fatigued and have all the symptoms back, just not as strong....withdrawl....interesting...

Thanks for all the help!
Rachel

 
Old 08-28-2007, 02:35 PM   #6
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Re: another exacerbation question (sorry)

One more question about possible 'withdrawl' effects - can it make
you feel shaky? I don't exactly know how to explain this feeling/movement
of my muscles, but it usually doesn't last long - it sorta is like I've had way too much caffiene? Or is this some new random MS thing?

Rachel

 
Old 08-28-2007, 05:09 PM   #7
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Re: another exacerbation question (sorry)

Rachel,
it could be either MS things or withdraw effects. When I do steroids, I feel GREAT For the entire 5 days im on them..then 3 days later BOOM. I feel worse then when I startd them. For about a week to ten days, I feel awful, wishing I never did the steroids! Then all the sudden you wake up and start feeling like your old self. IF ITS STEROID WITHDRAW. If its an MS thing, then you know how that goes...it can dissappear tomrorow or it can linger until it feels like leaving.
You should probably call your doctor and talk to him about this, just to be sure he doesnt want to put you on an oral dose of steroids, which sometimes helps both the eye thing, as well as tapers you down on the steroid effects. Im willing to bet you feel better by the weekend, but no one can know that for sure..
Hang in there girl...try NOT to stress - you are making it worse by worrying about it. There isnt much you can do either way, these things take time to fix themsevles..I feel for you. But, really, try to relax. Go watch a movie, read a good book, or just take some tylenol PM and get a good nights sleep.
ok?
Nikki
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Old 08-28-2007, 05:37 PM   #8
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Re: another exacerbation question (sorry)

Thanks for the advice! Yeah, I actually ended up calling my doctor because both my eyes feel like crap (pain!!!) and I can't really swallow. Due to the swallowing problem, she wants me to get back on IV solumedrol for a few days and then do step down orals afterwards.....which is sooooo frustrating because if I could swallow and just not move my eyes I'd feel like my old self...

And to think I went to her a month ago just because of ON....what can happen in a month is ridiculous!!! And Nikki you are totally right, I'm an anxiety ridden person as it is and that is definetly NOT helping. In fact, I'm pretty sure the stress of three jobs and then finding out I 'probably have MS' caused me to go from eye issues to feeling like complete and utter crap....grrr....

Rachel

 
Old 08-29-2007, 05:00 AM   #9
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Re: another exacerbation question (sorry)

Rachel, you know I read this and my first thought was "she is handling this pretty darn well". I want you to know, that as someone who was in your shoes exactly a year ago, I really do think you are clearer and more centered then you are giving yourself credit for.

Let me tell you, even if you find out you have MS, youll probably still have three jobs, and youll be worried about something else. Sounds like you and I are kind of alike...

You will handle this. And, going back on steroids for a few more days with a stepdown is NOT a bad idea. I would do it, if I were you. 3 more days on an IV will help your eyes and the pain....a few days on the oral stepdown will help your moods and emotions. BUT I Want you to promise me that during this period, you will TRY TO RELAX and DO NOTHING.

Mental health affects everything. I do honestly think youre handling this pretty darn good; however I also know that symtpoms get worse and become aggravated simply by having a crying spell or feeling overwhelemed. Try to keep yourself calm. Read, watch movies, do whatever it takes...but do not worry about MS!
Hey, Ive had MS for a year. I just graduated with my MBA, I have a fulltime job, a needy husband, and 3 stepkids, one of which lives with me. Think this is stopping me from living? No. IT takes awhile to get a grip on this...but you will...and it will be okay.

We will all be here to help you along.
Hugs, and happy day.
Nikki
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Old 08-29-2007, 09:24 AM   #10
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Re: another exacerbation question (sorry)

Thanks Nikki!!! I aspire to be as calm as you someday! And gain my focus back on the boyfriend and graduate school. Right now I just can't focus on anything but the symptoms and I know thinking about the swallowing problem isn't helping at all!!!!

I had an appt with my primary care doc this morning, she reminded me to stay calm because MS symptoms can come/go and worsen before they get better....

The other day I was sitting on my bed with my legs crossed and got up to walk, having pins/needles and freaked out.....this is called WAYYYYY too much anxiety....

Anyways, goodluck with your MRI/neuro appts!!!! I'm hoping all goes well for you!

 
Old 08-29-2007, 04:56 PM   #11
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Re: another exacerbation question (sorry)

Rachel,
repeat after me: I CAN DO THS. I CAN DO THIS. I CAN DO THIS. (if nikki could, so can I!)

I did graduate school, got married, got step children and got thru my tests today without freaking out....talk to me on the 7th when I have my follow up to see how those tests played out...but for now, life goes on as usual.

YOU CAN DO THIS! I have faith. Write whenver you need a reminder, ok?

Nikki
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Old 08-29-2007, 07:22 PM   #12
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Re: another exacerbation question (sorry)

Quote:
Originally Posted by oceangirl19 View Post
Thanks for the advice! Yeah, I actually ended up calling my doctor because both my eyes feel like crap (pain!!!) and I can't really swallow. Due to the swallowing problem, she wants me to get back on IV solumedrol for a few days and then do step down orals afterwards.....which is sooooo frustrating because if I could swallow and just not move my eyes I'd feel like my old self...

And to think I went to her a month ago just because of ON....what can happen in a month is ridiculous!!! And Nikki you are totally right, I'm an anxiety ridden person as it is and that is definetly NOT helping. In fact, I'm pretty sure the stress of three jobs and then finding out I 'probably have MS' caused me to go from eye issues to feeling like complete and utter crap....grrr....

Rachel
My favorite neurologist once told me that oral prednisone should not be taken if you have vision problems. I don't know if this is true but because of it I have never taken it orally.
Candy

 
Old 08-29-2007, 09:09 PM   #13
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Re: another exacerbation question (sorry)

Yup, I have heard that too. I think she vaguely mentioned something about that (the neuro tends to think aloud). However, she said it might help with the swallowing (which is what I'm worried about)....we'll see...ugh...

 
Old 08-29-2007, 09:11 PM   #14
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Re: another exacerbation question (sorry)

Rachel, you've gotten good advice here -- including from your doctor! If you treat ON with steroids, the recommended way to do it is with IV, then FOLLOWED by an oral taper (although some I hear don't use the taper). ON survivor here but I did not go on steroids so what I know about the meds is by reading and discussing with my eye doc. FYI, the current recommendation for this treatment is a result of a study called "Optic Neuritis Treatment Trial" or ONTT.

Hope you feel better soon!

 
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