[AynaDee]

I don't know what I could be doing that's so wrong but it has to be something.

I firmly believe I am in another flare. Symptoms have come back and I have been monitoring them, started Saturday, and was hoping they would be gone by today and they are not. So I am thinking this is NOT a pseudo and that it's another flare. BUT HOW?!?!

I have been taking those forsaken shots on time, even though they make me feel like dog crap.
Alcohol makes me deathly ill now so I haven't drank since '09.
I have reduced my hours at work to TEN hours A WEEK. (who can live on that, really?)
I'm trying to keep stress far away from me so I haven't been talking to my family members recently.
If I start feeling drained I either nap or lay down and rest my body.
I haven't been doing as many chores or activities.

I just don't get it

What could I possibly be doing to cause another flare?

We are in the fifth month of this year and this (if it is a flare like I am thinking) will be my FOURTH flare. I'm so close to throwing that Rebif away. What's the point in taking a drug that they don't know if it's going to work and is damaging my liver and making me ill 3x a week, if it's not going to keep these flares away from me?

I don't do anything anymore. I quit my serving job because I saw that this disease was going to break me down real quick if I continued, I don't party, I can't stay awake (EVEN AT an $11 MOVIE THAT I HAVE BEEN DYING TO SEE), I can't work 40 hours (apparently it doesn't even want me working 4 hours), I can't wash the dishes and sweep the floor in one round, have to take 20 minute breaks in between, so it takes forever to get simple chores accomplished. I have changed so much of my life to satisfy this whiney lil ***** known as MS and it won't leave me alone.

Seriously. What am I doing wrong?

[FaithS]

Some of the ABCR's take awhile before they become effective. Talk to your doctor/neuro. Four flares in 5 months does sound excessive.

Your doctor may wish to give it more time. Or, may wish to switch you to a different med. Different meds work differently for different people.

But, talk to your doctor about your concerns regarding whether this med is working for you or not.

~ Faith

[Dejibo]

im sorry you are suffering. This disease really isnt fair.

[Kitty]

You're not doing anything wrong. MS is such a puzzle of a disease. It's like a fingerprint.....no two are alike and no two people with MS have the same symptoms. No wonder doctors are still scratching their heads about it. Some folks respond well to the DMD's. Some don't respond at all.

I decided to stop sticking myself everyday and tried LDN. It's given me the most symptom relief of anything I've tried. I still have some symptoms and they flare up from time to time but resolve themselves much quicker than if I was taking nothing. So, I'm staying with this course of treatment until a cure or something better comes along. I feel like that's about all I can do at this point.

The first couple of years I was diagnosed I did everything my Neuro told me to do to the letter. After much research on my part I decided to try my own ideas. I wasn't getting any better using the doctors suggestions and, really, that's all he could do was suggest various methods to control my symptoms. Nothing was going to make MS go away. I feel much more at peace with the disease now that I've taken some control back.

[tkrik]

You're not doing anything wrong. Unfortunately, it's just the disease process.

Talk to your dr. about changing meds. You may just be on the wrong one.

I don't know how long you have been dx, but my 1st year was full of "serial" flares. I had one after another every 6 to 8 weeks - total of 6 or 7 flares in the 1st year. It was frustrating and annoying and even a little scary as I had no clue what this disease was going to do to me in the long run. Eventually, things got better. I don't know if it was the Copaxone or just the disease process slowing down that I started doing better.

Hang in there and know that you will be ok!

[AynaDee]

Thanks guys!

You all made me feel a little more settled about the situation!

I was dx 2-8-09 and that first year was hard, I myself had 7-9 flares in year one. That year was super tough, every time I would bounce back, I'd fall into another one and saw alot of Prednisone and IVSM that year as well.

I have been on Rebif since 5/09. My flares still keep coming but it seems they don't last AS long. So with that being said, I guess the DMD is working, I think I just expected to not have anymore flares.

It's crazy because I remember on 2/9/09 being in the hospital and the neurologist telling me that I am lucky to be diagnosed in this time period, and that this wasn't going to affect me and I would still live a normal life.

I will say he was right about the timing, being we have some options for medication to treat symptoms, but normal and not being affected by this disease was WAY WRONG. How could I have possibly been so naive to believe that man?

Maybe he truly feels that MS doesn't affect the lives of those suffering from it

I have researched LDN and it seems very intriguing, but my neurologist does not back that drug.

He was considering taking me off of Rebif and put me on Copaxone last September, but since I came out of the flare so easily he said he was certain it was working. I guess I need to suck it up and deal.

[Kitty]

I was on Copaxone and then Betaseron before I went on LDN. My Neuro won't prescribe it so I get my scripts from a doctor who will.

The FDA approved DMD's only have something like a 30% chance of possibly preventing some flare ups. Those odds aren't good enough for me. Especially with some of the side effects I was having. And not knowing what it was doing to my liver right now and in the long run. Plus the ridiculous cost associated with them.

There's no magic bullet that will help all of us. And I hate to sound like a cynic.....but there is just too much $$ to be made by the pharmaceutical companies to offer us anything but a slim chance of a drug that might possibly relieve some of our symptoms. I think we all just have to find what works for us personally - whether it's an FDA approved MS drug or a combination of holistic remedies and/or OTC meds. At this point I won't put all my eggs in one basket.

[NurseNancy]

i'm sorry you're having such a difficult time with your MS.

i've been on copaxone since '03 and have done well. no flu ish sx's.
have you had a recent MRI? i'm wondering if you have any active lesions.

and no. you're doing nothing wrong. you're being your own best advocate.
MS doesn't respect any boundaries and has a mind of it's own.

i hope you do better soon.

[karilann]

I kinda started out like you and until they gave me a 5 day steroid drip.....then it all slowed way down. This is when I started Betaseron (2003) and I have only had minor issues since.
You really need to mention the meds to your doc in case he/she doesn't think what you are taking is working for you. Give the new drug a decent amount of time to work......and maybe ask about a steroid drip......
I'm sure some here may disagree with me, but I had a good response with the steroids and have been fairly stable since (only 1 new lesion since 03).
Everyone is like a snowflake with this disease so hang in there!

[SallyC]

I hear you Ayna and just hate that this rotten disease is making you so miserable. Just to know that you are not alone and that we all go through this at one time or another and in one way or another. We know what you are feeling and validate your anxiousness and grief.

We accuse ourselves of deniel sometimes and yet, it's the Doctors who are in deniel. They can't solve our problems, so it must be all in our heads..

Hang in there, dear and live your life to the fullest that you are able.