Aa
Wondering if I'm overreacting
I wonder if I am having a "normal" reaction to MS. I know there is no way to say what is a normal reaction to the disease, but is what I am feeling possible?? I have my first relapse in October 2008 (optic neuritis) and my second in Sept 2009 where I went numb pat my waist in a matter of a week. This is when I was diagnosed. My MRI showed lesions on both my spine and brain. I started on Rebif immediatly.
The problem that I am having now is that I constantly feel bad. It is also very day to day. Ocasionally I feel somewhat close to normal, but never quite the same as before. Somedays walking is already a real stress and my vision in my left eye has never gotten back to normal. Is it normal to feel so bad so quick?? I see other people with MS living normal lives and wonder if I am over reacting and should feel better than I do.
Thank You for listening.
FYI: This is my first post.
The problem that I am having now is that I constantly feel bad. It is also very day to day. Ocasionally I feel somewhat close to normal, but never quite the same as before. Somedays walking is already a real stress and my vision in my left eye has never gotten back to normal. Is it normal to feel so bad so quick?? I see other people with MS living normal lives and wonder if I am over reacting and should feel better than I do.
Thank You for listening.
FYI: This is my first post.
Some people do better with the interferon-type drugs, while others are better off with Copaxone. If you think the flu-like symptoms are unpleasant enough not to take the drug, talk to your neuro and see if you can change.
The first year after I was diagnosed was very hard. I felt bad all the time. Light hurt my eyes, and flickering light made me feel very weird. I was so fatigued that I slept most of the time. I think I probably had two or three relapses that first year. The second year was better - I felt better, had more energy, was able to do more.
Finally, four years after diagnosis, I feel pretty good. I still have deficiencies - in my thinking, in my muscle strength, etc. But I have never felt more normal than I do right now.
So hang in there. Neurological damage takes a long time to heal. Usually 3 months for minor damage to 7 years for more severe damage. The trick is to stay healthy and relapse-free so your body can recover somewhat.
The first year after I was diagnosed was very hard. I felt bad all the time. Light hurt my eyes, and flickering light made me feel very weird. I was so fatigued that I slept most of the time. I think I probably had two or three relapses that first year. The second year was better - I felt better, had more energy, was able to do more.
Finally, four years after diagnosis, I feel pretty good. I still have deficiencies - in my thinking, in my muscle strength, etc. But I have never felt more normal than I do right now.
So hang in there. Neurological damage takes a long time to heal. Usually 3 months for minor damage to 7 years for more severe damage. The trick is to stay healthy and relapse-free so your body can recover somewhat.
Welcome. First of all it is totally normal to have off days - dont worry there will be good days. Rebiff can sometimes make you feel down as well and coping with an MS diagnosis is a huge event in anyones life........ You'll get there I promise, recovery can be a long frustrating road but hang in there.
We are all here for you.
Sharon
We are all here for you.
Sharon
I have never been to a Neuro Opthomologist. My Neuro basically said that is how the disease works. Some things will recover, some will partially recover. No rhyme or reason. I think part of the reason in the "flu like" symptoms from the Rebiff. Those are getting unbearable.
hi. : ) i started reading/posting here recently for the same reason. i had a relapse and haven't felt too much better since. it's really difficult to come to terms with the idea that you've got a new "normal." AND that that "normal" is changing day to day (or hour to hour!). it's scary, it feels weird, you begin to think you're going a little nuts..
but others with ms are around and they're some of the most understanding people. good luck. and allow yourself to rest often.
but others with ms are around and they're some of the most understanding people. good luck. and allow yourself to rest often.
yes like wobbley said - make sure neuro knows- but its very scarey and frustrating when you go days feeling bad then into weeks! i have done that and wonder if it will get better- hang in there
it just might take more time! let us know take care! tick
it just might take more time! let us know take care! tick
Welcome to the forum, sorry your not feeling better and I know it can time and I hope you are letting your Neuro know how you are feeling??
MS is different for everyone, have you gone back to the Neuro Opthomologist for you vision?
check out the "HEALTH PAGES" on the page, top right side... there is alot of information there for you to check out.
hope you feel better soon and let you Drs know.. don't forget to write things down.. I make lists for everything, because I forget very quickly.
welcome again and take care
wobbly
dx
MS is different for everyone, have you gone back to the Neuro Opthomologist for you vision?
check out the "HEALTH PAGES" on the page, top right side... there is alot of information there for you to check out.
hope you feel better soon and let you Drs know.. don't forget to write things down.. I make lists for everything, because I forget very quickly.
welcome again and take care
wobbly
dx
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Here is that last discussion where a lot of us explored how we often felt bad and what it sometimes was:
http://www.medhelp.org/posts/Multiple-Sclerosis/To-those-with-MS/show/1199569?personal_page_id=875209#post_5486948
MS certainly can make us feel off. Not all people return to pure normalcy between relapses - I never did. I've come to accept this and know I just need to kep on keepin' on.
Is your feeling "off" related to flu-like symptoms of the Rebif? If so, you could see if the change to a lower dose Interferon would help - like dropping to 22mcg of Rebif or trying Avonex which is the lowest dose of the three. However, what you are describing doesn't sound like an interferon problem.
I, too, had the feeling that "other than my symptoms" I should feel okay. It just isn't so for me. Just to let you know that you are not alone in feeling crummy. It doesn't mean you are over-reacting, or a wimp, or that your MS is especially bad. MS also involves the gray matter, not just the white matter. The gray matter is where we "feel", have emotions, have fatigue, think, react, judge, and read our internal signs. I have come to believe that "feeling crummy" is part of the damage to the gray matter, just like fatigue, cognitive difficulties and depression.
I hope this helps.
Quix