Hi Ayna,
I am telling you how I feel about this.
First, that is way too many flares when you are on a DMD. I was having 4 relapses a year, one overlapping the other after a flu shot in 1999.

I relapsed like this from 2000 until 2004. I was on Avonex for a year 2001 to 2002 still relapsing from heck, with flu symptoms for 3 or 4 days and it hurt my liver.

So I was switched to Copaxone for about 3 years or so. I got down to three a year, once I had twice a one year, but long ones 8 weeks. Then I had gotten allergic to "C" after a while.:confused:

I had to have high oral steroids for every exacerbation and then the worse ones got 5 or sometimes 10 days of steroids of IVSM infusion at 1000 mg. The steroids always did the trick. And this was while on DMD's. :eek:

I was told to give up the Copaxone by a well known specialist because it was letting germs overrun my body, by it's faulty surveillance system. It seemed to have helped for a while.:confused:

I don't think any of the DMD's work well enough if at all, but people are afraid to stop them, feel threatened by their doctor or feel forced to take something. Just my opinion.

I put up with hardly being able to work too, with flu and relapses all at the same time. It was overwhelming. I had MS since dx in 1981. I was better without all their medication crapola.

They put people on them right away. Why? Maybe they would be better without them? Give their body a chance to heal itself or as I did treat with lower oral steroids, when needed, like in the dark ages.

If inflammatory, steroids fixes that. The DMD's don't help inflammation, or reduce lesion size, and DMD's don't work for everyone, so what do they do? hmm

You're not doing anything wrong.

MS has a mind of it's own, it does whatever the heck it wants, whenever it wants to, and if no one else has noticed, it's completely insane.

I want my MS to leave me alone for awhile, but so far, I havent been able to service it an eviction notice.

Hopefully your MS will crawl into a hole and not bother you for awhile.

Thank you all so very very much! Your comments truly make me feel a little better.

I myself worry about my liver and also about how my body will react to the DMD years from now. The drug itself creeps me out to the max. And I hate how painful they are, how they make me feel, and what they're doing to my used to be pretty skin.

The neuro was wanting me to do the IVSM drip, but I have already done 2 3-day drips and 1 5-day drip. All worked and helped me get back on my feet but it makes my body go crazy. My face breaks out, I gain a stupid amount of weight, I eat like a trucker, and my moods become so manic that I myself am convinced I need to be locked up, and I deal with that for a month or so.

I would LOVE to drop off of Rebif, but its a fact, I am far too scared.

I have not had a recent MRI. Last one was in 2009 when I was diagnosed. At that time I had at least 12 active lesions, one that was so big it covered the whole top portion of my brain (neuro said he thinks steroids have shrank that spot, so hopefully its not as big). There's also some lesions by my brain stem which makes me wonder if that's what is causing me to stop breathing while sleeping?

Talked to the nurse today who believes I am in another flare. Tried getting me on some form of steroid but I told her I want to try and come out of it naturally. Hopefully I can. The right side of my abdomen from the belly button and wrapping around to the right side of spinal cord is so numb, almost a painful numb, especially when showering. Its truly driving me crazy and it seems to be getting worse. I might have to end up having to do the droid, but I am going to hold off as long as I can.

Thanks for sharing your experiences. You all save my sanity and make me feel normal. Not too many people can do that ;)

I completely sympathize with you on the numbness wrapping around your abdomen. I've got it on the right side of my stomach, running thru my right hip, and it wraps around and ends on the left butt cheek. Really really uncomfortable.

It had gone away for about 2 weeks and came back this morning. It's affecting my new exercise plan that I've started. (walking on a treadmill for 20 - 30 mins a day) Walking today was NOT fun. Right leg wanted to drag a little on the treadmill, and I got tired really fast today.

MS is sooooooooooooooo annoying!! I hate it when it's being a literal pain in the...ahem!

Other than daring to have MS, you aren't doing anything wrong!

Possibly an underlying infection like a cold?

I lived in constant flares despite my Copaxone until my CCSVI treatment.

I am so sorry that you are having such a terrible time, :hug: my heart goes out to you - this damned disease is so pervasive and unpredictable - no area of your life is safe.

Huge hugs and know that my thoughts are with you. I agree with what others have said, talk to your doc, maybe this is the wrong med for you.

This disease is evil, arrogant and completely sadistic.

I hope things improve for you soon.

Lyn

hugs :hug:

You see, if you are doing something very wrong, then we all are as so many of us are in the same boat as you.;) We've all been through good times and bad times with this disease. I hate the bad times but enjoy the good times and use those good time memories to get me through the bad.

Hope you are doing better today!:hug:

Switching to a different DMD Medication may be whats in order for you. Everybody reacts differently to them, some work very well, some not. For 'protection' for your Liver Milk Thistle works very well and doesn't cost very much. It tends to make your Liver more tolerant of things.

If none of the DMD Medications, CRAB drugs, work moving to Tysabri may work well for you. Many people have had success with it and the risk of PML, which is very bad, is extremely low.

Sometimes it can take a long journey to find what is best for yourself.

That's IT!!! We are all doing something wrong!! what the hey is it??? :D