Too new to understand.
 

Diagnosed in 2007, have had what seems to be exacerbation's: (starts with numb and tingling in leg then hands and strange headaches and confusion, feeling awful)each late spring since. I had an infusion the first year and this time I took the pills, I caught this one early because I had been there last year. Is this what to expect even while on the disease modifying medications once a week? I had read that some people on the meds do not have relapses for years.Should I talk to my Dr. about changing medications? This HOT summer is doing me in. I'm stuck inside with the 101+ temps outside, I had been person who loved the outdoors, now it brings on the above.

I was also diagnosed in 2007.

I took Copaxone for two years and still had exacerbations. Quit taking Copaxone last year, and...still having exacerbations.

I'm kind of starting to think my neuro is jinxing me. He's told me a couple of times that I was in remission, and it seems like when he mentions the remission word, I end up having a new flare about a week later. That happened in April. I was fine, went to see him for a regular checkup, got told I was in remission, and within like five days I was numb over 75% of my body and was having problems walking and in serious pain from the spasticity.

That flare wont let go of it...it does something new about every 6 weeks now.

Next time I see the neuro, I'm going to tell him to never mention the remission word ever again, even if I dont have a flare for another five years, I never want to hear the word "remission" again because it apparently ticks off the MS trolls in my head and makes them start causing problems.

Are you taking Avonex? That's the only 1Xweekly DMD I know of. Everyone with MS is different and experiences their own unique course of the disease. Some folks have flares sporadically....several times a year. Some have them at the same time each year (for me it seemed like October was the "month" for a while). Some have one and then it's years before they have another one or even any sort of symptom.

Your Neuro should be able to look at your medical records and see how often you seem to be having an exacerbation. I doubt he will advise stopping or even changing your DMD if you're having periods of remission.

Some folks respond very well to the DMD's and some don't. It all depends (I believe) on your own body's chemical makeup as to how the DMD's work for you. I tried but could not tolerate any of the conventional DMD's. I take LDN now and it's been a Godsend for me. My body's chemical makeup responds very well to it. It's just a crap shoot.....but once you find what works for you individually I'd stay with it.

P.S. You're definitely not alone with being stuck inside during this heat wave. It's ridiculously hot here and I've been indoors now going on five days! I feel like a hermit! Heat just makes everything worse for me with my MS.

Kat,

The new medication called fingolimod will soon be available, and it is a pill (hence, shots may be a thing of the past for those with MS).

The weather in VA has been horrible for folks with MS. When things cool down (hopefully soon), you should feel better.

-Vic

Hello Kat and welcome to Neurotalk.

Some people can go years without an exacerbation (relapse, attack, flare-up), some do not.

I have gone years without an exacerbation, I have had 5 exacerbations in the past 25 years and I do not use any of the Disease Modifying Drugs (DMDs).

Some with MS do find certain times of the year to be more troublesome. If I have an exacerbation it is usually July, August time frame...I hate this time of year.

This disease is different for each of us.

hi kat, and welcome,

i would definitely let your dr know what's happening. maybe even keep a sx (symptom) journal with sx's and dates. it might help your dr.

getting too hot is common for lots of us. it can even bring on a pseudo flare.
then, when you cool off the sx's go away.

don't leave your dr out of the loop. and don't worry about bothering him. that's what they're there for.

i've been on copaxone since '03 and done well. it's a daily sub Q shot. i wouldn't have tolerated the interferons.

let us know what your dr says. and stay cool. there are inexpensive ($5) cooling collars available during the summer. like walgreens or walmart. they really help a lot. i go out in the am as much as possible.

(((((Kat))))), You are not alone. I hope you feel better soon. :)

Welcome Kat...lots of info and support here, as you can see...
I'm not sure what is an exacerbation and what is a flare...so look to the other posts...all I know is I have spasms almost every day of the year now, which is quite annoying!:rolleyes:
Hope you continue to look around here and share...and follow the above advice-keep a symptom journal with dates, etc to share with the doc...

no advice, just hugs :hug:

I'm pretty sure the words "exacerbation" and "flare" can be used interchangeably. I tend to do that, altho lately I've preferred the word "flare" because it's easier to say when you're kvetching (complaining) to your neuro about any new symptoms. (I've done quite a bit of kvetching to my neuro over the last 3 months...stupid MS is picking on me!)

I googled this since I dont think my MS brain will be able to type out a coherent explanation tonight (like I said, the MS is picking on me). I got the info from About.com's Multiple Sclerosis site

"The Official Definition of a Relapse
The official international definition of a relapse is “a period in which a person with MS experiences an acute worsening of function that lasts for at least 24 hours, usually lasting for several days or weeks, followed by an improvement that lasts for at least one month.” To get even more specific, the symptoms associated with a relapse will develop over a couple of days, remain the same for three to four weeks, then slowly get better over a period of about a month. "

Also from that same page

"You can suspect a relapse if you answer “yes” to the following questions:

* Am I experiencing new symptoms or worsening of existing symptoms?
* Has this worsening happened over the course of 24 hours to a couple of days?
* Have these symptoms lasted more than 24 hours?
* Has it been at least a month since my last relapse? (In other words, had these symptoms been non-existent or stable for at least 30 days before they appeared or got worse?)
* Am I free of fever or infection?"

linkage back to the page if you want to read more http://ms.about.com/od/multiplescler...pse_or_not.htm

and here's a page that explain the pseudo-exacerbation
http://ms.about.com/od/signssymptoms...intoleranc.htm