As a "newbie" to this board and CIS, I am curious about your experiences relative to day-to-day symptoms. Are there ever days you feel completely "normal" as I thought that is what remit means? I am scared to wake up each day and see what I might find with my body. My dr. said the dizzyness should eventually go away. Do most symptoms go away and I understand that the meds are so important especially early to stop potential permanent damage where most times it happens, right? I feel like I feel every symptom but it can't all be MS, right? I don't think I can live forever being dizzy.
Jodi, youre welcome for the heads up. No problem, glad to see you posted a new thread on this. I think you have some really good questions but I also think you are misinformed about a few things. You wrote :I understand that the meds are so important especially early to stop potential permanent damage where most times it happens, right? Not true.
Meds are important only when the disease is 100% verified. The mcDonald criteria is what doctors need to use to diagnose MS. Not only are lesions important but symtoms have to match up as well. Without one or the other, the doctor cannot prescribe a MS drug or give a MS diagnosis. As far as permanent damage- MS drugs DO NOT reverse damage already done. And, 99% of the time, the damage done will NEVER reverse itself. Depending on the attack on the myelin, if its completely damaged, it cannot regenerate or grow back. I myself have my initial symptoms which presented almost 5 years ago, which I still have.
Another thing you brought up is where you asked "This cant be all MS can it?" thats one of the things that newly diagnosed patients always think. If you get a sore throat and feel under the weather, you think you are having a MS attack. If you wake up and your whole body hurts and your legs feel heavy, you think "MS attack" if you are sleepy after dinner, you think MS fatigue. NO, YOU ARE CORRECT NOT EVERYTHING IS MS and 99% of it wont be. The sleepiness will be because you worked hard or didnt get enough sleep the night before. The sore body and heavy legs can be because you are coming down with the flu, and a sore throat, is a sore throat! Learning to tell the difference between MS related stuff and regular sickness takes time. The best way to handle it is to take care of yourself, and if something lasts longer then 24 hours and doesnt feel any better, call your doctor.
I really hope this helps you alittle bit. We are here for people like yourself, to ask and hopefully help clarify. Let us know whenever you need us.
"Will I ever feel normal again?" This is a question that echoes loudly. In a word- Maybe. For me, I deal with MS daily. For me I had to re-establish a new normalcy. What others might consider a bad day, I consider a normal day. I have learned to adjust and enjoy my "good days". You mentioned CIS. You may never have another episode or you might have MS further down the road. Again, the ever present "Maybe" pops up.
MS can vary wildly from one MSer to another. You can read a list of symptoms and find that you only have experienced one or two, while another has a check mark by every symptom. I believe that a positive attitude and stress free life is your biggest saving factor. The first thing my first neuro told me was to avoid stress and stay positive. He told me that stress was the enemy of the MSer and if I did not want to find myself in an early grave or non-functioning, then I needed to make changes to my life. That was in 1982- 28 years ago come this October.
Welcome to the forums. I hope you will always find warmth and support.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Jayhawk is absoltely right; however Im the opposite. When I sit around with too much time on my hands, I find all sorts of things to worry about. Im a mom of 3. I have a needy husband who has been laid off for most of the last year. I am in grad school. My job involves traveling 100-300 miles a day by car and calling on all sorts of people in horrible situations. I am completely spent by the time I get home and now its time to cook, clean, do laundry and then school stuff. I usually fall asleep with my head on my desk by midnight.
And I have MS.
How I do it is beyond me. My friends tell me my schedule would kill a healthy person and usually I believe them. But a year ago, I took a lesser job, took off from school for 2 semesters and basically worked at a desk 40 hours a week. I hated myself. I was miserable. I felt that I had no direction and that I had choosen to end my options. Less then a year later I wound up back in high pressure job and back in Grad School. And, im happy! Busy, missing out on alot of socializing and doing things- but the way I see it, I was given a gift of being intelligent and the ability to make something of myself. When the time comes that I cant drive, or cant do what I do now, I want to have something to fall back on. Teaching, writing, maybe coaching from home? I dont know, but I do know that you have to do what WORKS for you. And as Jayhawk said, its going to be different for everyone. From symtoms to how this will play out in the end, no two of us are on the same path....
Hugs and be strong. We have all been where you are, felt what you are feeling and survived it. You will too!
Wow, thanks all for the responses. MsNik you mentioned driving until you are no longer able to...do you believe there will come a point someday where you won't be able to? Isn't it possible you'll never get to that point? I am in a similar situation. Hectic professional sales job and two kids and I need to keep my mind completely occupied so I don't freak out. As far as my note about the meds preventing permanent damage, let me restate because I don't think I was clear. My understanding is that meds will help reduce future episodes and reducing, especially early in the disease, are those early episodes that can typically cause the most permanent damage- please say this is true ??
Yes and no to your question. There is nothing that supports that earlier epsisodes cause longer lasting or more permanent damage. An episode which happens after 15 years could leave you pemanently disabled...
However, starting a Disease Modifying Drug sooner, rather then later, will prevent many relapses which MIGHT occur. Notice the word MIGHT. Some people with MS only ever have ONE episdoe...some have them regularly. The type of disease is so individualized that there is no way to know which way you will lean....so, if preventing disability and relapses are your number one priorty (they are mine), then getting on a DMD (MS med) sooner is your best bet...most docs are under the school that until you have had 2 or 3 real episodes you shouldnt commit to doing shots- but thats really old school. Newer school of thought is to get on a drug NOW, while you arent experiencing problems to prevent the MAYBEs of the future. I started Rebif within a month of my diagnosis and have never looked back. (actually I started Copaxone first, but thats a different story, I was only on it for 3 shots when they took me off).
Excellent, we are on the same page exactly. I think of the meds as an insurance. It may never happen but it may so why chance relapses if you can do something to give you control of reducing the liklihood. That makes sense about the old school doctors because some of the messages on this board seem to be those doctors that advise to wait until it happens again. Do you have an opinion on the % liklihood of future episodes based on the initial episode etc? I think I heard 3 or more lesions plus symptoms 70-80% of another one.??
Dont believe what you hear. There is no prediction. MS affects all of us differntly. If that were true, I should have had so many more attacks by now. You have to find the medicine which works best for you and sometimes its trial and error, like my first experience with Copaxone.
When I was in month 3 of Rebif- I woke up feeling like death in the middle of the night. I had some fuzzy vision and pain behind my eye. I was scared to death. Calling my Neuro in the middle of the night, I found out he was on call at the local ER that night. I went in. Scared. Really scared. Turns out most of my issues were related to Optical Neuritis, which is inflamation of the optic nerve. It WAS an attack, or excaberation or relapse. Whatever you want to call it. I felt horrible, mostly from the Rebif. Between the two, I wanted to die. I was terrified. He started me on oral Steroids, which I have since learned are NOT the drug of choice, IV steroids are.....but within 3 days, my vision was completely restored and I felt alot better. He sent me to a Neuro-Opthamologist, who was the one who said "if there is a next time, we go straight to IV Steroids". Sure enough, less then 2 weeks later, it happened again. Straight to the Neuro-Opthamologist I went, and started IV SM (solumedrol) that day. I was 100% better in 24 hours. It never came back. But the Rebif side effects remained keeping me feeling lousy every shot night for another month...then it stopped. Completely. I was scared, when I went for that 6 month MRI that my Neuro was going to say because of the relapse that he was taking me off Rebif. I was finally used to the drug. But thats when I learned relapses are not unexpected in the first 6 months while the drug builds up in your blood stream...and that it wasnt unusual at all, that my own anxiety along with the side effects had me freaking out! He told me I was doing fine...to trust myself...to stop thinking the worst every time someting happened or I felt "off" and to start taking care of me, instead of worrying about me. That was the day that I made up my mind that MS wasnt going to rule my life.
They say taking MS drugs allows you to control your MS and not have your MS control you. I totally believe it. Now, you just have to decide which one you want to try.
Go research all three, Copaxone, Rebif and Avonex and then post questions because we have people here on all three. Just because Im a Rebif fan, doesnt make it right for you!