I must be doing something very wrong...
 

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. :mad:

Seriously. What am I doing wrong? :(

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

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.

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!:hug:

Thanks guys! :grouphug:

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 :confused:

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.

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.

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.

Just a thought.....
 

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!:hug:

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..:rolleyes:

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

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

The heck if I know! If I knew, I would stop doing it and would most certainly share the info with you all. :D Until then, we're all going to have to continue with our wrong doings. :p OMGoodness, can you see me explaining that to a judge; how I just have to continue my wrong doings until we know what causes MS and how to stop it. I'd get a nice comfy room with "maid service", meals delivered to me, etc. HMMMM! Anya may be on to something here.:D

Another thought,,,,
 

Pick up some OTC bladder infection kits. A little bit of money, but sometimes a lurking infection will bring on the other MS issues.
I always keep the test strips in the house and a stock of AZO pills that I get at the drug store. They help the infection

Sometimes I have an infection and don't even feel it! But I've learned to check when other MS symptoms pop up. :hug:

So true, KA, thanks.:)

These are all going out to each and every one of you!
:hug::hug::hug::hug::hug::hug::hug::hug::hug::hug: :grouphug:

I am feeling rather drained today and a little more painful numbness (that must really sound crazy) in the same area, but at least it hasn't spread any! lol I'm trying to just stay relaxed and not do too much and hope that I can naturally come out of this flare. I was thinking about the switch off of my DMD to a different DMD, but then I was thinking.. what if... instead of taking a DMD.. I find a healthy balance of vitamins and change my eating habits and maybe some good supplements? What if I reduce my Omega 6 intake and increase the Omega 3? I heard the ratio of Omega 6 to Omega 3 in corn is 6/1. I started looking into what I eat and almost everything I eat has some type of corn in it :eek:. What if my diet is adding to this inflammation? I would like to throw this idea at my neuro, but I have a feeling he will not support it. I mentioned dropping off the drug a while back and he and the nurse kinda freaked on me.

Thanks you all for sharing your experiences and assuring me I am not alone.

:grouphug::grouphug::grouphug: