Still new at this
 

I've only been dx since Nov. 07, with my testing only taking about 4 months. (I kinow--lucky, huh?)

It's weird, I can look back and notice a few things here and there that seem to have been MS, or maybe not. No way to tell, so I try to just forget about those and move on.

But ever since the testing for MS began in August I've had a lot of sx and they haven't let up since. Of course some days aren't as bad as others. I might be a little slow, but is this what the rest of my life will be like? Tired hands and legs every day. Blurry vision for 11 months, then clear for 2 then blurry again? Tired tongue (gotta be the weirdest!) jaws and throat. And don't forget cog-fog and jello-brain!

Are these little glitches always going to be there and be somewhat constant?

I had a check up with my neuro in Jan, and a 2nd MRI in Dec. 4 small lesions in my brain. Just the past two weeks I've noticed balance issues: I'm teetering left a lot, and can't tell if its balance, or legs, and a tiny bit of foot drag on my right. Since I was just in the dr office and the changes are very minor I'm planning on watching things until my next appointment in April.

It seems so odd that these sx were not there at all a couple years ago and now are so prevelant. I guess I want to know I am typical for RRMS, when so far (excluding possible undx flares prior to Nov. 07) there has been no remission, unless two days counts as remission?

Catch,

Are you on any DMD's? Sounds like you might be having a flare.

Has your neuro ever given you IVSM?

Hang in there - Chris is going on one year in April and it has been a wild ride. Everyone says the first year is the worst.

Keep us posted on how your doing.

It does sound like you could be in flare-up take care of yourself Catch.

Just started my third month on Copaxone.

Hi Catch, Nice to meet ya!

I wax diagnosed in May 2007. It feels like yesterday and 10 years ago at the same time LOL.

I'm in the middle of a flare right now. Keep track of what's going on and call your neuro asap. You could be in a flare and you might need some 'roids.

Good luck and my thoughts are with you:):)

I hate to say this but it sounds like you're progressing in your MS. It also could be that you are much more educated about MS and therefore more attentive to your body thus noticing more and different symptoms.

Just keep your neuro informed on all of these developments.

Flare up or not?
 

Thanks all, for your input. Here's my summary:

Maybe I'm just highly in tune with my body. That is true, but it's pretty hard not to notice that your tongue is sore...lol

I might be in a flare. If so, do I need 'roids? Since I'm not severely impacted, I'm thinking not, but then again, what do I know?

Or, worst case, I could be progressing (my own fearful thought). And yet, the progression is extremely mild: no blindness, no limp, no severe pain. And the two MRIs I've had (one in Aug and one in Dec) show no changes. That should be good news, right?

My options: Call my neuro now, wait a few weeks to see if anything changes, or wait to see her in April.

I've spent my whole life "playing it by ear" but when it comes to your health, and your ability to see, speak, walk, work waiting just stinks.

Been through some tough crap in my life. Now I know why--All preparation for this!

Catch,
 

I waited until I was progressive to bother to notice it all... well I noticed, but ignored things. Now I sound alot like you... constant symptoms. I can think back with 'bout every symptom and now know it was going on for years at a lesser degree. It kinda puts things together and inperspective... Not sure this is helpful... but I know how you are feeling. I was just dx this Dec

Actually, that helps. I think I'll call the neuro today, just to make sure she understands what I thought she did: that I have these symptoms constantly.

:hug: Sorry to hear there's been little let up in symptoms.

I understand. Same here since my DX process began in '06. The docs are trying to figure me out since I don't complain about my symptoms much in between visits, but my clinicals get worse each time I go.

My doc is MRI happy, so I keep track of temperature changes or an illness that might be making my MS go nutty. I only call if a totally brand new symptom hangs around for about a week.

I've been on Copax since May, and my recent brain MRI shows it's been stable since then. So I also understand that.

Hang in there, and know you're not alone.

Catch,
 

I'm glad you are going to be proactive... Though I'm sure you probably never used to put yourself first....but in this... It's got to be ALL ABOUT YOU... to some degree. Go the extra distance for yourself... I'll have to try to follow my own advice... :wink:
(Easier said than done...and all....) Good luck! :)

hello and nice to meet you.
it's a good idea to keep your dr informed.

i've been on copaxone almost 5 yrs.
my mri's have been stable altho my disease has very slowly progressed.

it can take up to 8 mos for the copaxone to start working in your CNS.
hate to tell you that but with time you might see improvement.
the DMD's are meant to help stop progression but may not do anything to help with sx's (symptoms).

that's why you should contact your dr.
please keep us posted.

Hi Catch, and welcome to the forum.

As far as all the symptoms you are now noticing, I think it's a bit like when you buy a new car . . . before you get it, you hardly see any, but once you get it, it seems they are everywhere.

The first year or so can be difficult, not only emotionally, but often with symptoms too. The inflammation can be the most aggressive in the beginning, then can let up for several months or years.

Everyone is different.

The CRABs work for some people and not as well for others. You really want to give them a year or so though, to "do their thing" unless you have bad side-effects. It doesn't sound like you've had any trouble adjusting though, so you should be fine.

The goal of these drugs though is not to help with symptoms, although some people do feel better because they may work to reduce attacks. They do not NECESSARILY reduce progression of the disease itself . . . but if they do work to reduce attacks, that MAY also have a positive impact on progression.

I had a hard first few years, then I did very well for the next 12. I wasn't without symptoms during that period, but they were one's that I learned to ignore after a while. You may always have some symptoms coming and going, but if they become really troublesome, that's more likely an attack.

An attack is defined as "new, or worsening of existing symptoms, lasting longer then 24 hrs". Usually it will be several things happening at once, and the symptoms are normally more difficult (not just bothersome).

Things can change from day to day, or year to year. Try not to get too discouraged if things linger too long for your liking, they could still improve. :)

Cherie

Catch,
One of the things my first neuro told me has stuck with me to this day; When we get the MS diagnosis, we tend to become "hyper-aware" of everything going on with our bodies.
My dx was similiar to yours. Once THE BIG ONE hit, it was only three months until it was official. Meanwhile, all my symptoms worsened and it felt like new ones cropping up, literally, every day.
I explained this to him and he assured me I wasn't dying.:rolleyes: But it did make me realize that some of it I wouldn't have given a second thought to had I not been recently labeled MS.
And like you, I can remember things from months and even years prior that may have been MS trying to expose itself.

I'm not trying to belittle your post, mind you. I just saw things in it that I went through. After the official dx and I started on Rebif and a BUNCH of pills, it still took another 6 weeks or more before I could see things improving/remission.

Hyper-aware. Yeah probably, but things have definately been worsening, particulary over the past three weeks. If an attack is new, or worsening of existing symptoms, lasting longer than 24 hrs; this seems to qualify.

Thanks for your input, everyone. I probably would've just continued to ignore all the Sx until things may have gotten really bad. Instead, I see the neuro on Tuesday.