Stupid Question on Relapses
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KerrieB40
Posts: 13
Okay, so I'm totally new to all this. I have a really stupid question that I probably should know the answer to but have no idea.
How do you know when you are having a relapse? I bet you are thinking I'm nuts for asking but I really don't know.
I was diagnosed (finally) in January 2012 showing an active spot in my MRI. This was my 6th MRI in about 12-14 months for a comparison to my first one which showed my entire brain riddled with lesions. I have a polka-dot brain with this stuff. My symptoms range all over the place that can include some speech issues, hand-coordination issues (with typing or writing), muscle weakness/fatigue, and the onset of exhaustion from out of the blue that is so sudden it's hard for me to stay awake (that comes and goes multiple times in a day).
I started Betaseron at the beginning of Feb and felt crappy during the whole time increasing the dosage. I'm finally at full dosage and once I changed from taking ibuprofen to Tylenol instead, most of the crappy feelings went away. I was taking a lot of time off or working from home. In any case, I feel better now at the full dosage but still feel the muscle weakness/fatigue & sudden exhaustion.
For the life of me I can't tell if it is caused by the medicine or the MS!!!! I want to blame it on something but not sure which. I don't know when I should call my doctor and when I should just deal with it. I do keep a journal of sorts on a calendar and print that out each time I see the doctor so she knows what has been happening. I just don't want to be a whiner.
How do you know when you are having a relapse? I bet you are thinking I'm nuts for asking but I really don't know.
I was diagnosed (finally) in January 2012 showing an active spot in my MRI. This was my 6th MRI in about 12-14 months for a comparison to my first one which showed my entire brain riddled with lesions. I have a polka-dot brain with this stuff. My symptoms range all over the place that can include some speech issues, hand-coordination issues (with typing or writing), muscle weakness/fatigue, and the onset of exhaustion from out of the blue that is so sudden it's hard for me to stay awake (that comes and goes multiple times in a day).
I started Betaseron at the beginning of Feb and felt crappy during the whole time increasing the dosage. I'm finally at full dosage and once I changed from taking ibuprofen to Tylenol instead, most of the crappy feelings went away. I was taking a lot of time off or working from home. In any case, I feel better now at the full dosage but still feel the muscle weakness/fatigue & sudden exhaustion.
For the life of me I can't tell if it is caused by the medicine or the MS!!!! I want to blame it on something but not sure which. I don't know when I should call my doctor and when I should just deal with it. I do keep a journal of sorts on a calendar and print that out each time I see the doctor so she knows what has been happening. I just don't want to be a whiner.
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Replies
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no such thing as a stupid question. I might be wrong but i thought a new relapse was defined by "having systems that last more then 2 days, and don't change". if i were you, i would just call the neuro, and find out for sure. good luck.0
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I think it is probably just the medicine working it's way good into your body. But, being newly diagnosed myself, I could be wrong. My nurse told me to give the medicine a solid 6 months before deciding whether or not to switch.
I also think that if you have a question, no matter how stupid you think it might be, call your doctor and ask. MS is a very scary and can be a very serious thing and you need to be fully informed. That is what your dr is there for.0 -
I don't personally have experience with Betaseron, but I have to tell you, even though my lesions are a lot better, the one thing that is a constant and not getting better is ongoing fatigue. I can sleep enough hours and still be tired. I can run five miles, then I'm exhausted. A regular work day is tiring and my new best friend is caffeine. Anyway point is fatigue is a constant ;( Hopefully you get some help with it, I agree with the others that you should be asking lots of questions at the beginning to really understand how MS will affect you, because it really is different for everyone.0
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Relapses vary for everyone. Usually it is when your normal tanks................you are a lot more tired than normal, your balance is really off, your will to get out of bed and do things is not there...............problem is, sometimes relapses coincide with just regular symptoms of MS. If you really feel like hell though, at least call your Neurologist and talk to them.0
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I just had an ah-ha moment which I am chalking up to brain mush. I was not facing (or realizing really) the fact that some of the MS symptoms I have will be a day-to-day occurrence but others (during a relapse) will flair up.
Yes, I know that was stupid of me.0 -
I just had an ah-ha moment which I am chalking up to brain mush. I was not facing (or realizing really) the fact that some of the MS symptoms I have will be a day-to-day occurrence but others (during a relapse) will flair up.
Yes, I know that was stupid of me.
Not stupid at all...it took me a while to realize the same thing. My neurologist never really specified this to me. Initially I had significant numbness/tingling in my legs, and over time it got better...but a year later I still have a little bit in my lower legs, more so when I'm tired, when I drink alcohol, or when I exercise. My doctor told me it could altogether disappear, but it might not. (I know, so vague, right?). So day-to-day, I have this mild tingling in my legs, and fatigue, but if anything new comes (which it hasn't since the first two flares), then I would consider that a relapse.0 -
Seems I am one of the oldest MS sufferer on here, so I'll put my 2 cents in. I have had MS for over 20 yrs. now. Thankfully I am still mobile and don't have what most would think were major disablilities. Those 'sudden' onslaughts of tired spells, imbalance, and dizziness, have plagued me since the very beginning, even tho' I have been injecting Beta Seron for all these yrs (I was told I was one of the many original recievers of the meds.'). I can be out gardening, just walking during the heat of the day, doing laundry, washing my car, and suddenly one will hit, with an overwhelming need to go sit or lie down till my 'energy ' returns. Your treatment will NEVER cure MS on make its symptoms less prevalent, and the onset slower over time. Yes, it is important to keep up with your meds, but they can only do so much. You have to learn to pace yourself, decide what is important for you to do as each one of us may have different issues.... It is important to 'pace' yourself avoid the heat of the day if you want to so something strenuous. With time comes experience..0
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Relapses or flare ups, or, attacks, or exacerbations (they are all the same thing) are caused by inflammation in the central nervous system, which causes demyelination. Demyelination slows the transmission of nerve impulses, which provokes the symptoms of multiple sclerosis.
A multiple sclerosis relapse is the RAPID onset of NEW, or worsening of previous, symptoms that LAST at least 24 hours. Some people endure them for days, weeks or even months. To be considered new, a relapse must be separated from the previous one by at least 30 days.
So if you are out in the heat and your balance gets worse, but it gets better once you cool off, that is not a relapse....
It is different for each but if the symptoms last-- it is probably a relapse.....
FOR ME...Heat will make symptoms that exist worse....... Alcohol will make symptoms worse... a hot shower will make symptoms worse....
Not all relapses will have active lesions, and not all lesions will cause symptoms.. depends on which area of brain has the spots....
Hope that helps!!!0 -
Though I've had MS for 30 years, my first exacerbation since diagnosis occurred a couple months ago. I feel like I was newly diagnosed, as everything is new to me and I have many "stupid questions." I think "stupid questions" are the norm for MS.
I am with psmd concerning the fatigue. It started with me while I was pregnant with my first child. It is relentless. All the things that help nonMS people don't apply with us--like that burst of energy after exercising, or once you get going you feel better, ha!
Please continue to ask questions, we all can learn from them or hopefully help.0 -
I agree with everyone - the fatigue is a constant. Even on the days when you feel great it can suddenly hit and it's like walking into a wall. The last relapse I had was considered an actual "relapse" by the docs when it passed 3 weeks in duration. It lasted from mid February 2011-mid May 2011. Haven't had a relapse since but the fatigue, the tingling in the legs, the dizzy spells and the slurred speech when I'm really tired - they have never gone away. My neuro says they may not that this may be the new me. You have to adapt to what you can and cannot do safely.
And there are no stupid questions. I think the more things we bring out here the more things people learn about what MS really is. Because alot of us just won't remember to ask the neuro or we think it's a stupid question and we don't want to bother them.
Hang in there, you are not alone.
Bea0
