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Old 01-05-2009, 04:25 PM   #1
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Relapse - how bad does it have to be

Hi all,

I know I should know this at this stage (almost 3 years after initial attack, 2 years after dx), but how bad do things have to be to be considered a relapse?

My first attack was severe. Two months laid up, out of work, with severe symptoms. I know that technically you need to have a new symptom for 48 hours before it's considered a relapse. But 'relapse' also suggests to me, a return to old symtoms? While I have a few permanent symptoms, I have never been as bad as I was initally.

I have new symtoms (numbness and a prickly feeling in my feet and legs, weakness in my right hand). I have had them constantly for over 3 weeks now. Which technically I would assume to be a relapse. But I don't have any of my inital attack symptoms (severe fatigue, pins and needles, itching. loss of feeling and use of my left hand), apart from the permanent ones.

Could this be a relapse or could it just be stress and tiredness. Regardless of the stress induced symptoms of the last few months, I really believed that 2 weeks holidays at Christmas would allow me to recuporate and recover. Instead I seem to be getting worse.

Any thoughts?

Thanks,

Cat

 
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Old 01-05-2009, 04:49 PM   #2
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Re: Relapse - how bad does it have to be

Hi Cat!

I am still struggling with the answer to your question. After my initial attack, dx, and only course of Solu-Medrol, I'm still confused. My doc says the same thing--new symptom for 48 hours for a relapse. According to my MS nurse, I had a relapse last February and another last month. I didn't get steroids for these though. I did have new symptoms for much longer than 48 hours, but I could still function, so no treatment. I'm still not sure if those last two really were attacks!

I've been feeling pretty well for six days now, but for a month before that, I had lots of new symptoms. They're going away now. Sometimes I can't tell if it's an attack worthy of steroid treatment or if I'm just having a "bad MS day, week, or month".

Your question about if a relapse can have old symptoms--I struggle with that too. I had plenty of old symptoms, along with new ones, come back last month. I just don't know.

My MS nurse told me that if it's a relapse, I'll know. But she's known twice when I didn't! Very complicated.

I hope you feel better soon. The Christmas season most certainly had an impact on how I felt, and now it's getting better. I started feeling better the day I took my tree down!

I'm looking forward to reading responses to your question. Can an attack be mild, or in the eye of the beholder? That's what it seems like to me sometimes.
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Old 01-05-2009, 05:31 PM   #3
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Re: Relapse - how bad does it have to be

Symptoms, Relapse......whatever the case, to me I treat everything the same (even though I go through it each day). If I am having worsening problems, I attack it with rest, veg time, and stretching.

Christmas, with the hustle and bustle and other stresses, is indeed a trigger for many people in my opinion.

I would recommend a huge amount of self-pampering!!

 
Old 01-05-2009, 05:48 PM   #4
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Re: Relapse - how bad does it have to be

Hi Cat...Im so sorry you arent feeling well. I know you had it rough experiencing that MRI, etc...was hoping you were "just busy" and didnt have time for us.
In my doctors opinion, a relapse is defined by both old OR new symtoms which come on and last more then 48 hours...meaning, both the old ones can return, or new ones can flare up....is it a relapse or stress? In your case, probably some of each...is it solu-medrol worthy? Only you can tell,....you know what IVSM does to a body - if you can handle it, and think it will help with the symtoms, its worth a try. The last time I did them, I went to work with the stinking IV shoved up my jacket sleeve...no one knew, but that was too crazy. The steroid rage I was going thru was alittle over the top for even me! I dont suggest that route.....however, if you think that the steroids will calm down the inflamation- then its worth a try..of course the longer you wait, the less chance that they will do anything, so make up your mind, soon.

I wish I had more to offer, but your in my heart and on my mind....ive missed you.
Hugs
Nikki
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Old 01-06-2009, 09:40 AM   #5
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Re: Relapse - how bad does it have to be

Quote:
Originally Posted by MSJayhawk View Post
Symptoms, Relapse......whatever the case, to me I treat everything the same (even though I go through it each day). If I am having worsening problems, I attack it with rest, veg time, and stretching.

Christmas, with the hustle and bustle and other stresses, is indeed a trigger for many people in my opinion.

I would recommend a huge amount of self-pampering!!
I do the same thing after a while it all seems to be the same. some days are more tolerable than others. but my nero give me different advice than what I have been reading here he said that if it lasts for 24 hrs it is a flair up.But if I called him when it lasts 24 hrs I'd be on the phone all the time.after all I am a man and we tend to be a little more stubborn.I attack everything with sleep.If I cant sleep I take some of those pharmaceuticals he prescribed they all cause drousyness.Taken the way prescribed I get very sleepy.1 20mg baclofen 2 4mg zanaflex and 1 5mg valium. If that don't work then I call. sleep usually helps,however this may not be right for you it is worth a try.

 
Old 01-06-2009, 02:42 PM   #6
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Re: Relapse - how bad does it have to be

I also struggle with this question, and in fact I've started several posts in the past with the same concern. I have had symptoms pop up but nothing to the extend of the initial fare-up which led to my diagnosis a month and a half ago. I feel like I struggle with this because being newly diagnosed, I am on edge and looking to attribute everything I experience to MS.

Sorry...guess I'm not much help

 
Old 01-06-2009, 04:49 PM   #7
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Re: Relapse - how bad does it have to be

Carol, you're helping by reminding us that we're not alone in what we dont understand about MS. I was diagnosed in September 2007, and I don't feel like I've even scratched the surface on what I need to learn! Actually, I'm glad that I'm not the only one here who has these questions. It's a great comfort to know you're not alone.

Like you, I attributed everything to my MS when I was first diagnosed. It took awhile to sink in. The day I was diagnosed, I went straight to work from the doctor's office. In hindsight, I wish I would have taken at least a couple days off to process it. In the beginning, I ate, drank, and dreamed MS. It's huge, and it's a complicated illness that we know practically nothing about. I did most of my learning right here. Who better than those who have experienced the same thing?

I totally agree with Jayhawk and UncleSam about rest. Sometimes all it takes for me to feel better or lessen my symptoms is a good nights rest. It's the best MS drug of all.
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dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 01-06-2009, 04:58 PM   #8
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Re: Relapse - how bad does it have to be

Hi all,

Thanks for all the replies and good wishes.

I'm not thinking of steriods. I am functioning and able to work etc (just not at normal capacity) so I don't think I need to, it may just make everything tougher. The symptoms have been constant for a few weeks. Not getting any worse. Today was even a little better, so I think I just need to ride it out.

I'm dissapointed because next month is 3 years since my first attack and I was really hoping that at my neuro appointment in Feb I would be able to say 'three years without a relapse' and be really positive about the future.

On the other hand, I have been terrified of having a relapse and it's actually reassuring that I've had a relapse where I can still function in day to day life and a relapse does is not necessarily as severe as the first attack.

Work and life is set to calm down over the next few weeks, so hopefully I'll be sleeping again and will get my strength back.

And I have a full weekend of 'me' time and pampering planned!

Thanks for listening.

Cat xxx

 
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