Meda - help or not? - Multiple Sclerosis Message Board

fancycanelady · 06-08-2005, 08:30 PM

Hi,
My story is a lot like "Curlygurl"s (one can only hope to be like her!!!). I was first dx in 1970 when I was 20. I had 3 spinal taps (no such thing as an MRI in those days), due mainly to losing 1/2 the sight in my right eye. Docs came back with an MS dx and because I was also being treated for a debilitating kidney diease for which there was no cure (at least there wasn't at that time!), they told me that I'd never be able to carry and take care of a child, so on their (several of them) advice, I had my tubes tied. 8 years went by and I had what was called a very mild case of MS. Then, a cure was found for my kidney problems, so at least that stress was behind me. However with various testing, now they told me I did NOT have MS, but couldn't tell me why I was still experiencing some symptoms of it. This went back and forth for years, so I never told anybody that I "might" have MS, just went about my business and tried to keep up with daily routines. Now, I've just turned 50 and started experiencing MAJOR problems. Had another MRI and sure enough, NOW they say I've had MS all along and now there are more lesions. I have 6 in all. I guess the earlier stuff only showed 2 and the spinal taps back in 1970 were guesswork at best. I use a cane now, but hope to only have to use it sparingly once this episode passes. Way back when they offered you no meds, but now I'm being offered the standard choice of 4. My question to anybody out there who reads this is - do these meds really help, and how hard is it to learn to give yourself these shots? I have a wonderful, supportive and super husband who would also learn and help me out. He notices my symptoms faster than I do at times!
In your case "mom of two", I would try to maintain a very postive attitude and know just how far modern medicine has come in the last 30-40 years. Life is (and can always be!) GOOD!
P.S. Even though I had my tubes tied and a subsequent hysterectomy due to other problems later, when I married my husband, he had a 2 yeard old girl who I helped raise, and she is now married and has blessed us with the most beautiful granddaughter in the world, who is now 2 and takes my cane in stride! Take care everybody!!

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baddoey · 06-09-2005, 07:19 AM

I've just started down this MS road and just began doing daily copaxone shots - are they working? who knows. that is the thing, they are supposed to slow it down and not really repair what damage is there. I wish I could answer that question for you - many people on these boards do say that the severity of their attacks was reduced by medication. As far as doing the shots, they hurt a little bit, but no real problems in doing them. they give you this auto-ject thing that really does it for you. . many people do it without the auto-ject, but i'm just not there yet.

fancycanelady · 06-09-2005, 08:08 AM

Thanks baddoey,
Isn't copaxone the one that doesn't give you the flu-like side effects? But it's daily compared to the others that are weekly, semi- weekly, etc... Can you explain what an "auto-ject" is? Does that mean you just aim it at the part of your body and push a button as opposed to plunging down on a syringe? I'm such a chicken!! Do you take it at night?

KelliD · 06-09-2005, 08:53 AM

Hi FancyCanelady! Just read your last post here. Autoinject basically is just a matter of putting the injector in the right spot and pressing a button.

I heard Biogen is developing that for Avonex, but for now I do it the old fashioned way. Believe it or not, though it's not the most pleasant thing to have to do to yourself, you do get used to it.

I think the four major meds being offered for MS right now all operate the same way...they are designed to slow the progression of MS. I've been on Avonex for about a year and a half and my symptoms - when they flare - are not nearly as harsh as "before" Avonex. Is Avonex the reason? Who knows..MS is unpredictable. I could wake up tomorrow and never have another symptom as long as I live..that's just the unpredictable nature of MS.

If you are exploring treatment options, I would suggest researching all four of the CRAB medications and choose the one that works best for your lifestyle and convenience. I chose Avonex because it's a once-a-week injection and suits my needs.

fancycanelady · 06-09-2005, 11:45 AM

Hi KelliD!
Thanks for the info. Did you have side effects when you first when on Avonex (like flu-tpye symptoms)? And, if so, did they subside or stop over time?
Fancycanelady
PS Of ALL the "words" that medicines stand for, we MSer's wind up with
CRAB?????? That just cracks me up!