Since it seems like everyone who has ever responded to my posts on the other forum is now on this one I thought I would also post this here.

I am going through another relapse this will be my 4th since April 1st. I know I have asked this before but can this be happening I am starting to think that I am not really even getting out of a relapse at all. I know that I have to acept the fact that I have a new me and that I wont feel the same as I use to but I dont think it should be like this.

The last couple of weeks I started having muscle spasms in my left leg, then it went to my left big toe going numb then it went to my whole foot being numb. a fews days after that all started my lower back went into spasms.. now today I was at costco only to have my whole left leg go numb on me.. not good when your back is already killing you. So I came home and now my right eye is killing me.. which isnt new but its not all the time. Oh and I keep getting this out of body experience where I feel like I am suddenly drifting away is very strange and not to mention the fatigue I have been fitting since April 1st. Has anyone ever experienced it when your MS just doesnt stop or you dont have something new happening at least every other week.

I need advice on what I should be asking my Neuro tomorrow if maybe I should switch off of the Copaxone because maybe its not working or maybe I dont have RRMS seeing as there is no remission involved..

Any suggestion would be wonderful I am at the end of being hopeful

Thanks
Lisa M

Hi Lisa!

Sorry to hear you've been having issues since April.

Glad to hear you're calling the neuro. Always a good deal when something new comes up. Was wondering how long you've been on the Copax? My neuro wants an MRI every 6 months for now to see if it's still working.

This has been a very rough summer for me. But the MRI I had in August showed no changes, so it's been the heat and humidity causing my MS fun.

Copax takes 3 - 9 months to start being effective. I had my last flare ( after 2 years of back to back ones) 3 months into treatment. The MS specialist on staff said that was not unusual, especially with my track record of flares. Since then, I've been pretty stable.

I retain about 75% of my flare symptoms, and am still RRMS. During the flare, the symptoms are constant. When the flare is over, most of the symptoms come and go.

I have two constant symptoms and one symptom that fully remitted. Everything else is in my MS grab bag that my body picks stuff out of each day. Never boring.

Thanks for answering finlady..

I have been on copax since April 15th of this year. I have been told it takes awhile to start working maybe I am just impatient I just dont see any change in the way I am feeling and it just keeps getting worse every time I have another Flare... I think I am just getting really frustrated, I dont know Ive never been really good with the waiting game that it seems I am playing.. I just want to feel like me again.

Lisa, sorry to hear about the state you're in.

Have you been on IVSM (solumedrol) for any period during this?

I was dx'ed in 'relapse' so to speak, and put on IVSM at that time. 2 months later, bam, relapse, and was back on IVSM again.

Then I began my Copaxone just after the second course of IVSM (near the end of May 2008), and knock on wood, haven't relapsed yet, but my symptoms come and go.

I think I finally found a good combo of 'pain and symptom' medications for myself, in Amitriptyline and Clonazepam. Stress and anxiety definitely trigger my symptoms, and fully what triggered my previous relapse.

Hi Laura,

I think I am probably headed down the solumedral train again that is what he did the 1st 2 relapses I really dont like the affects the first few days but I did feel better a few days later I remember when you were in your last relapse. We were both diag around the same time..

Lisa

April that boggles my mind too is it one real long relapse or a few , I have had a tough year too and the other day deb said to me she was wondering if this isn't one continual relapse, I sure hope you get to feeling better real soon, and calling the Neuro is a good move,

I have the same thoughts about whether or not I am really RRMS. I was dx in March 2007. I have never experienced a full remission. I continue to experience most of my original symptoms (spasticity, burning/tingling pain, back pains) although some days are better than others. Other symptoms ( vertigo, bladder urgency, eye pain) come and go. I have never been able to get entirely rid of my cane since my original (and maybe only?) flare.

Yeah, the first few days are crummy, that's for sure. That's when it's all about the chewing gum and water.

Good call on letting your neuro know that you don't find the Copaxone is doing the trick, and/or that you feel like you have been in constant relapse.

Is it possible that you might have some sort of low grade infection in you somewhere?

I thought I was in a constant relapse until this summer. I had dental work in March to remove some old disintigrating fillings (amalgams) and had a relapse during that. (bad infection in the teeth, and it escaped into my system during the dental work)

Had more dental work a couple of months ago and there was also infection in those teeth. About a week after the dental work was done, and I was nearly finished with the antibiotics the dentist gave me just in case the infection got into my system again, I started to feel good for the first time in two years.

I've got a a few more teeth to get fixed, and I'm hoping that once I get those teeth dealt with, that I'll have more improvement in the MS symptoms.

It's just a suggestion, but maybe you should have your dentist check to make sure there isnt anything going on in your teeth that could be causing a hidden low grade infection.

Also have your regular doctor check you for other types of infections. (UTI's)

I just got back from the neuro and I am in another flare.
He did all of the usual tests and I didnt do very good I apparently dont have any feeling in my right leg which I really hadnt even noticed which is still boggeling me. My balance is way off I couldnt stand on either leg without holding on to something which I also havent noticed its amazing what you learn not only about MS but yourself when you are there...

I started another round of Solumedral today and he is switching me from Copax to Avonex if anyone has and info on Avonex it would be much appreciated.

Thanks for all of your replies
and yes Laura lots of water and something for this nasty taste...