Flare?

[newbie but goodie]

As many times as it has been explained to me, I still can't tell if Im in relapse. I recently had a resurgence of the MS hug and foot/leg numbness/tingling/pain. That faded away after some weeks but was followed up by a UTI then bladder spasms. Now that's cleared up and half my face and scalp is numb and tingly. I am tired of calling my neuro every dang time a new Sx pops up but I dont want t ignore a flare. Does this type of thing sound familiar to anyone?

[BigA]

I'm really not sure - and I'm not sure anyone is. If your doctor gave you steroids, you'd all say it was an exacerbation. Some people have drastic changes overnight. I have this feeling and also based on my experience, if you're not sure... and it's mostly thinks you've experienced at *some* time before, or pretty close to it, then it's probably not an exacerbation. That's just my experience. Basically, if you're not sure, it's probably not.

And in any case, if it's not serious, would you want steroids anyway:

See if this helps:

https://www.virginiamason.org/workfi...acerbation.pdf

[Kenmore]

As many times as it has been explained to me, I still can't tell if Im in relapse. I recently had a resurgence of the MS hug and foot/leg numbness/tingling/pain. That faded away after some weeks but was followed up by a UTI then bladder spasms. Now that's cleared up and half my face and scalp is numb and tingly. I am tired of calling my neuro every dang time a new Sx pops up but I dont want t ignore a flare. Does this type of thing sound familiar to anyone?

when was your last relapse? are you on dmd's - if so, how long? the ms hug by itself isn't likely a flare. although, your other symtoms seems like they were a flare. these new symptoms sound like they are too...i would say yes, it is a flare, especially if you have never had issues in those areas prior to now. don't feel bad about contacting your doctor - that's what they are there for

[Camsue]

Hi newbie but goodie

cute name ..sounds to me like you're pretty good at dx your flares..are you on a regular med?

Does your Neuro want you to call for each flare? In the beginning I would try to keep track on my calendar. The flares stopped being so obvious after I was on the med, without pronounced stop and start times...

Check with you doctor first, then try jotting down sx you have and take your report to next scheduled appt. It helps me to 'focus' on other things

take care

[newbie but goodie]

when was your last relapse? are you on dmd's - if so, how long? the ms hug by itself isn't likely a flare. although, your other symtoms seems like they were a flare. these new symptoms sound like they are too...i would say yes, it is a flare, especially if you have never had issues in those areas prior to now. don't feel bad about contacting your doctor - that's what they are there for

My last confirmed relapse was in Nov 2011 when I was Dx. It was MUCH worse than the Sx I am experiencing now. I almost needed a cane (probably acxtually did but I was being stubborn), ON, numb from my ribs to my toes, spasticity, insomnia, horrific fatigue, etc. I am on DMDs now and have been for almost 1 year, although not fully compliant these last couple months. Ive been missing about 2 out of 7 shots.

I wasnt so sure about the hug- it is a baseline Sx for me, I think, as it never fully goes away for a measurable amt of time but it was how it resurfaced that made me think it was a flare. Sudden, lasting, and severe.

I just had MRIs in Nov and they showed no active demyelination but I guess that could change in a matter of weeks, huh? I guess the flare last year was so severe that I dont know if I could really put these Sx in the same category.

My neuro doesnt advocate for steroids unless my functioning is very hampered or the Sx do not fade on their own. I just worry that if I am ignoring Sx, flares, etc that damage is being done and I am not doing anything to stop it besides all the regular things I do (vitamins, DMD, clean eating, etc). Neuro says that he would like me to switch to Ty as it appears I have "low level inflammation occurring that Copaxone is not addressing" despite my clean MRIs. He doesnt call these phases of Sx flares but they bother him all the same. Ty is off the table for the meantime though, I am JCV +

[newbie but goodie]

Big A: You are so right about the steroids. I would be happy if I never had to do that again.

[Kenmore]

[QUOTE= I am on DMDs now and have been for almost 1 year, although not fully compliant these last couple months. Ive been missing about 2 out of 7 shots. [/QUOTE]

I talk to the Medcco Avonex pharmacist with any questions I have about the medication. They are experts on it.I also talk to my Avonex mentor. Both have told me that if I miss 1 shot after the first 6 months, not a problem, but if I miss 2 shots, then it's like starting the medication all over again. This also makes the side effects of the shot worse.

I have also missed 2 shots in a row - due to stress or traveling...which is why I called them about it. But I felt so much better once I got back on a consistent schedule with the shots.

You might just be having residule effects from your previous lesions. Sometimes it takes forever to heal from attacks. But the new locations is what worries me. Your Dr is probably the best to guide you in this case since everyone is so different.

I can say that after I got on the Avonex, after a second attack right after I recovered from the first one, I felt much better. I would have small issues, but nothing that lasted more than a couple of days though. However, at one point, I started having new symptoms on and off...a few months later I had my second full blow attack.

So just try to take the Avonex consistently and try to keep your stress low...sleep as much as possible while this is going on. If you're not having a flare, perhaps you can prevent one.

[newbie but goodie]

Kenmore- I am not on Avonex, I take Copaxone. They are daily shots and I miss about 2 out of the 7 I should take in a week. I am def going to have to change meds soon (becasue of noncompliance) but was hoping to get through the holidays before I start a flurry of Dr appts again

[Kenmore]

Hi Newbie - got it what do you think causes your non-compliance? (that's funny that you put it like that)...mine was due to stress...being overwhelmed in my daily life. I just couldn't add the shot on top of everything else.

I'm curious about yours.

[lukeduke]

I have been on Rebif since March of 2007. I am about to switch to Tysabri. I originally thought you were supposed to be off your current DMD for a month before the Ty, but no one has told me to quit it. I am due to start the Tysabri next week(12/21) and decided last night to not take anymore. That was mainly due to forgetting to take it out of the refigerator for the shot last night. Oh well.

[newbie but goodie]

Well the shots are every day and they are HARD on my skin. Each shot leaves me with a painful bump that takes days to fade. Sticking a shot every day means at any given time I have several painful itchy bumps all over my body. I try to deal with it though bc there are no flu-like side effects, no liver checking, no PML, etc.

Also, to be honest, my attitude is not great regarding the daily shots. I alternate between being angry that I am in this position and feeling guilty because I am not doing it right. My goal is to feel empowered, like I am taking control of my MS. I hear people talk like that and it seems to make for a more positive emotional experience. I am SO not there yet, though. So for now, noncompliance (my neuro's term to let me know that not taking my DMD is serious business).

[MarkLavelle]

I miss about 2 out of the 7 I should take in a week.

I don't have a link, but I recall reading that a Copaxone study had been done comparing daily injection to every-other-day, and they were nearly equally effective.

If that would work for you, maybe your doc would be OK with it if you could show him the study...

[newbie but goodie]

I saw that too. My neuro won't officially support me on that endeavor bc it's not a big enough or widely accepted study. He did say, though, that taking it most of the time is better than none of the time and consistency is key so not to get hung up on missing some, but rather shoot for 7/week and do my best.

I know of people without insurance that do halfsies with Copaxone and are pleased with the results.

[22cyclist]

Newbie but Goodie: Lots of MS neurologists treat with steroids only for weakness, and not for numbness. Some do, however, but to know if it is a true relapse, it must last for at least 24 hours-48 hours and be constant in symptoms, not intermittent.

If you are concerned, however, call your neurologist.

Good luck and feel better soon
Lisa