your post is interesting, it smellslike an incomplete storry...you aren't comming clean with us....
do you have other medical conditions with the ms?
other medications that you are on?
have you started a ms maintenance med yet, if so what is it and ask your doc how long until it gets up to fulll effects...the older medxs iknew that stuff but not with the newer meds. while your not being totally upfront with us, i hestitate to answer you post too directly...
i think i can say generally enough...muy first year was my worst until my ms was stabilized & with the new meds stabilization is even easier now..have patients, this first year is the longest....

a few years ago in california,i posted with someone who said they were eveluating the use of iv back packs so the person didn't have to do the infusion in thde hospital, i never heard what came about from that though? hope for the future?

Until I was diagnosed with MS I was perfectly healthy. No meds, save the occasional Advil or Reactin/Zertec for allergies. Even lost over 63 lbs and was tiring the dog out on walks before I because even slightly winded. Meds? Copaxone and, now, Tsyabri but, yes, this is my first year.

I was more interested, though, in your experiences of the like. Was it similar; even if circumstantially slightly different, or am I alone in the near monthly relapsing.

BTW, please don't deign to tell me that I'm not being up front. You're walking similar shoes but not mine.

sent message to you on uncertainty...opps i will cease posting.

HI LYNN AND JC STORMY...NO NEW ACTIVITY FOR ME SINCE STARTING GILENYA ABOUT 3 YEARS AGO...
I DID HAVE MY FIRST BLADDER INFECTION ...DO TO MS...I WAS IN THE HOSPITAL FOR 2 DAYS..I HAD NO IDEA IT COULD BE SO BAD.
I COULD'NT EVEN ROLL OVER TO USE A DISPOSIBLE URINAL

AT FIRST I THOUGHT IT WAS A MS EXACERBATION ..... I'M GLAD IT WAS'NT.
I'M BACK TO BASELINE USING MY WALKER AND WHEELCHAIR G

gbugg7777: So, for the most part, the if/when you get flare ups like that you do go to the hospital; absolutely understandable. Otherwise, for more minor things, you just keep it moving?

I was just wondering, in general, because I've never been a "bumped my elbow see a doctor" (for example) sort of person. So going to the hospital as often as I have been was kinda of weird and funny (to me).

Never gone to hospital for a flair-refused. Doctor always gave me prednisone to take orally which he said didn't work as well as going to the hospital but I didn't care as it helped me to the point where I was fine and happy with the results at the time. Would I have been better if I went to the hospital-I don't know?

YEA IM LIKE YOU...I NEVER COMPLAIN .....I DEAL WITH MY DAILY DISABILITIES ...IF YOU WAKE UP IN THE MORNING AND YOUR DRAGGING YOUR LEG 2-3 DAYS IN A ROW

YOU SHOULD CALL YOUR DOCTOR OR GO TO THE HOSPITAL

IF ITS JUST 1 DAY ...YOU MIGHT WANT TO WAIT 1 DAY...IT COULD ... JUST BE A BAD NIGHTS REST

STERIODS DO NOT PREVENT EXACERBATIONS ....WHAT DAMAGE HAS BEEN DONE WILL ALWAYS BE THERE
THE BODY WILL HEAL ITSELF SOME BUT NOT COMPLETELY IN MOST CASES

THATS WHY DMD PREVENT FLARES

GILENYA HAS BEEN GOOD TO ME NO PROGRESSION FOR 3 YEARS

This summer I was state-side, visiting my parents, and I had 3 'episodes' (where things went WAY STRANGE) I won't call them flare-ups because I have PPMS and I don't think it was exactly what people describe as one.
I could barely communicate when it was happening, but I made it VERY clear that I didn't want to go to emergency. Judging on what people here on DS report, it isn't worth it, as in it would have cost a fortune (doubt my travel insurance would have covered it!) and they probably wouldn't have really helped me.

I only had 1 overnight visit to the hospital after dx. After that occasionaly I would go in to get a solumedrol IV but they only lasted an hour or two to drip. My previous neurologist only liked to do solumedrol for eye issues. He always said he wanted to get me something immediately for an eye issue. When you ask how often in hospital do you mean overnight? Or do you mean just an in & out to get solumedrol?

dsprt4help: In response, I meant overnight. :) I have no problem checking in the the occasional clinic; I'd rather not but I have no problem. I just try to avoid when they start using the "for observation" phrases. lol

In a way, it is comforting to see that 1) I'm not the only one who is in such a situation and 2) tries like the dickens to side-step it altogether and just "deal" if possible unless something serious happens.

I was diagnosed about a year ago but didn't take a DMD. During that year I had some progression but I only went to the ER once for the hug which I thought was a heart attack (didn't know what the hug was at the time) and a UTI. The er doc just gave me an antibiotics and sent me home.
I really try to never go to the doc unless something major happens and so far nothing major has happened but this past September I went for a 2nd opinion at a MS Center and they started me on Avonex about 4 weeks ago so we'll see what happens.
So sorry its been so rough. I hear the first year or two is really hard, it has been for me, with dealing with the diagnosis and all the symptoms so hopefully it will get better or I should say we will get better at dealing and managing.

I was dx 10/2004 and have not been hospitalized at all. When I have gotten steroids at first I would go to the hospital as an out-patient in their cancer site for the infusion. When I was using Tysabri, this is also where I went. When I was on injectable medications and needed steroids a visiting nurse would come to my house after my work day was over.

copaxonetakes 9months to become fully efective,so your doc switchyed you b/4 you or he would have known what it would do fully. he probably could tell it wasn'y going to do it fully.

I think tyysabri is almost immediately aftyer starting?But tysabri can't unddamage that occured prior to dtarting ty.


longstory longer..

ms denylenates ones nerves..like a lamp in a hot atic withought insulation...the electric wire will deliver electricityunevenly, causing the light to flicker...if the attic had beewn cooler or the wqire insulated, the lampwould run just fine....

that's what ms does to our nerves. ms demylenate s our nerves--takes the insulsation oiff from around ther nerve. we have more erratic nerve conduction in he(higher tempersature) andf if we worek harder than usual generating our own heat......

there is something causexd psuedo flairs.flairs = relapse pseudo relapses...gbugg77 identified that situation---when an un optimal situatioon can cause the symptoms of a flair--so the thing to do is remmove the less than optimal situation of the flair continue...if they do call to re[ort
unoptimal situation--hot-cool down
tired - napp
exhusted- rest
tired eyes- rest eyes
tired legs- rest legs
hungry - eat....
stress-wait ti unstressed to evaluate symptom virus-wait until virus clearsz that includes a cold.

A RELAPSE---- is defined as symptoms lasting for at least 24-48 hours(?) and cannot occur less than 30 days apart from eachother. can't have a 2nd relapse 20 days from last relapse.

a psuedo relapse can be the symptoms of a relapse that resolve sooner than 24-48 hours when the triggering even/t copndition is that caused the symptyoms of a relapse are removed..psuedo relapses do not need to be reported to the doc.

SYMPTOM JOURNAL--being diagnosed with ms is a shock, suddenly a person is aware of their body so accutely. most people didn't think there was anything wrong until told otherwise...at first its good to keep a symptom journal so you learn what things just go away on their own & werent MS-and so you have the date when you last experienced a symptom if it keeps comming back repeatedly, you can tell lthe doc whan the last time you experienced the symptom maybe write down what you were doing, condition at the tyime so you learn yourt triggers.

post a thread asking othert advice on maintaining a symptom journa

Nerve demylanation & remylanation both happen slowly. the symptoms of a relase can apear sudden just like it appears sudden when the relapse is over..that's not the speed at which nerves are demyle3natyed/remylenate it's just that suddenly a person notices things aren't working normally..,that's the sudden part,NOTICING.
ms is a SLOW MOVING DISEASE--OFTEN CALLED A 20 YEAR DISEASE. THERE ARE NO MEDS TO STOP mS OR CAUSE MS NERVES TO REMYLENATE...THE BODY FIXES THE DEMYLENATED NERVES...THE MEDS JUST SLOW MS DOWN.

IT'S A CONTINUAL RACE GOING ON IN YOUR BODY...WITH MS DEMYLENATING YOUR NERVE AND YOUR BODY TRYING TO SCAR THE DEMYLENATION,,,,JUST LIKE A CUT ON YOUR HAND YOUR BODY CLOSES THE CUT & CAUSES A SCARE TO FORM OVER THE CUT........

THE MS MEDS DON'T STOP MS JUST SLOWS IT DOWN SO YOUR BODY HAS A CHANCE TO KEEP UP WITH REPAIRS TO THE DAMAGE MS IS DOING---AFTER A RELAPSE ITS VERY IMPORTANT TO KEEP A HEALTHY SCHEDULE GET SLEEP, EAT HEALTHY TO GIVE YOUR BODY THE BEST CHANCE IT CAN TO KEEP UP WITH MS STAY AWaY FROM STRESS IF YOU CAN GIVE YOU BODY THE BEST CHANCE TO HEAL THE RELAPSE.

when my diagnosing neuro told me i had ms, i thought he did it rather well. so io pass it on.....he told me i had ms, that i no longer have a "normal" i will have a series of "baselines" instead and every succeeding "baseline" will be less than the previous "baselne"

thats what a symptom journal helps you to do--identyify relapse from a psuedo-relapse and help you identify what your current "baselione" is.

i kept a symptom journa,l for about the first 9 months...then i stopped dailey journaling because i was getting too obsessed with it...but still i will make a note when something starts or stops. maybe make a note if its still happening a 24-48-week, month later?

with your new "baseline" there will be ms symptoms that start & stay...for instance my left foot started tingling in that first year, then my right foot they have never stopped. its a part of my "new baseline" my right hand tingles off & on, my left hand too but less than...my right hand..

the numbnes & tingling in my right foot at times goes up my right calf, but i lean forward because my balance isn't great & i read that leaning forward can cause pressure on my lumber spine,which can cause tingling in the leg,so that is poor posture caused by ms but not mt ms..just standing up straight helps with that...i have not been able to type with both hands for 8 years although I did 8 years ago. that "Proprioceptionsense" my brain isn't getting a singnal from my hand where my hand is in space for me to type w/o lookijg at the keys and with more than my index finger...that too is a part of my current baseline, it is my new normal---its caused from lesions in my neck--my new normal i don't think it will ever be as it was when i try to make as it was I just get frustrated NEW NORMAL--many "new normal" are symptoms that can start & stay, fatigue, tingling, weakness,heat sensitivity,stamina,doing things slower, you work around those symptoms, they are just a part of having ms..

then there are symptoms that affect functionality--like gbug7777 described he couldn't move his legs- efferent nerve attacked http://en.wikipedia.org/wiki/Efferent_nerves ,they affect functionality, hearing vision ect those you report & get treatment to resolve them sooner with steroids....some doc's only do steroids with symptomsthat affect a person'sd functionality


your on tysabri now you wrote somewhere..there is a tysabri users group for experience with that med

http://www.dailystrength.org/groups/tysabri