is it just me?

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is it just me?

Postby sunshine12 » Sun Sep 12, 2004 4:36 pm

hello,

here's my question, i got dx'ed 5 yrs ago with ms, noone ever said if rr/pp etc, they just said ms, i had hardly any symptoms, mostly muscle aches if stood or walked long, well about a yr ago, everything started "popping" up. i got ON hands were numb hadda be treated by iv solu in the hosp. they finally put m on avonex , that was 4 mos ago, since then i think i feel worse, i have no energy and i mean i get winded from getting up and going to the bathroom, my feet have gone numb, i've had the weirdest sensations on my tongue, my question is, could they of dx'ed me wrong and i dont have rr have another form and then avonex wouldnt help at all, i am so confused i have heard that avonex is supposed to stop from relapses, but when?? cause i'm still waiting.when i asked my doc she said its to help with mri not stop relapses, so which is correct? does anyone on any of the crabs feel worse?? thanks so much for taking the time to read
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Postby sunshine12 » Sun Sep 12, 2004 4:39 pm

noone ever said if rr/pp etc, they just said ms,

could they of dx'ed me wrong and i dont have rr have another form a


sorry all after reading i said hmmmm sounds contradicting. noone has still said if rr but i can only assume that since it seems like they give the crabs for rr????
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Re: is it just me?

Postby HarryZ » Sun Sep 12, 2004 6:42 pm

Sunshine,

Your message is a classic situation whereby the doctor ends up treating the disease without paying much, if any, attention to the patient.

I get the feeling that your doc really spent little time explaining to you about Avonex and what it might or might not do. This, unfortunately, happens far too often with MS patients. Avonex, which is an interferon class drug, is a immune system modulating therapy. In theory, and I really stress the word "theory", it is supposed to reduce your immune system's activity so it doesn't go after the myelin surrounding the nerves in your brain and/or spinal column. The docs really don't know how it works. Most clinical trials of the drug show that about 1/3 of the people will get about a 33% reduction of exacerbations (attacks) over a period of time. Supposedly the number of lesions in your brain will get reduced but there is little correlation between the lesions and your MS symptoms. Avonex won't likely make you feel any better and in some cases, depending on how you react to it, you may feel sicker. This feeling goes away after a few months for some patients but in others, it never goes away. Some become so ill on the drug they have to stop taking it and perhaps try one of the other "approved" drugs.

I would insist that your doc spend some more time with you and explain in detail the treatment that you are getting. And go armed with a number of questions, written on a piece of paper, so you can get all the answers to your questions.

Harry
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Postby OddDuck » Mon Sep 13, 2004 10:36 am

Sunshine,

Yep.........Harry said it very nicely.

And from the sounds of your symptoms, is it likely you were misdiagnosed? I sincerely doubt it. That rarely, if ever, happens. (I'm a one in a million case of probable misdiagnosis. Remember, my symptoms, and test results and progression don't match MS that closely now. And I always had things in ADDITION to MS, that complicated the diagnosis in the first place.)

In layman's terms, your neuro is basically correct (like Harry explained), even though your neuro should have spent more time with you explaining things. The ABCR drugs are not meant to make you feel better OR to treat your MS symptoms. BUT....you can get some additional medications to help you with some of the symptoms that you are struggling with. You might want to talk to your neuro again about some of those options, too.

There might be a big chance that I don't have MS, but I've become well-versed in it, that's for sure! :lol:

Deb
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