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    its official...i have so many questions :(

    today i was diagnosed with MS. i have 5 brain lesions (one that enhanced with contrast) and 5 spinal lesions (4 cervical and one thoracolumbar). the neuro said that clinically, i look pretty good with very few signs of MS, but that she is concerned with the number of lesions i have. she said that she is expecting a more benign progression because i present so well symptomatically, but that she can't be sure how the disease will progress. she also thinks that i may have had my first flare at 12 when i experienced a strange headache that eventually led to visual field cuts (i could only see parts of words on a page) and near blindness. this lasted for about half a day and then resolved. i had a similar episode at 25 but i just thought they were migraines.

    so far the only testing that she has done is MRI's with and without contrast. she offered me a spinal tap and i asked about evoked potentials, but she said that neither test would really offer her any more definitive information. she said there is nothing else that she can think of that would cause me to have these lesions. while i am not necessarily doubting her dx, i just wonder what you guys think. is she being lazy about my dx? the MS society diagnosing criteria includes evoked potentials and lumbar puncture. she said that at any time if i wanted to do these tests that she would order them but felt they were unneccesary. should i get them anyways? or is brain and spinal lesions the smoking gun, so to speak for MS?

    there was one lesion that is currently enhancing with the contrast in my brain. does that mean i am having a flare? or is that just something that happens all the time with MS? i have been reading up on steroid use for controlling the inflammation brought on by active lesions. should i ask about a round of steroids? or is it more based on symptoms since it just speeds up recovery and plays no part in how much demyelination occurs?

    lastly, the doctor wants to begin me on medication and suggested copaxone. i would like to get some opinions as far as side effects go for what medications work for you all. copaxone seems to have very few side effects but it needs to be injected daily...i'm not really thrilled with that. plus, weight gain was also a side effect. over the last year i have had to basically stop all physical activity and its hard enough to keep myself from ballooning up, i am unsure if i want a medication that will make it even harder. also, i am in a grad program right now and i work part time as well. what medication causes the least amount of problems for you in regards to fatigue/brain fog/ sedation/ other issues that will make meeting these demands more difficult? avonex looks like another medication that i might like to try. how are the IM injections? are they really painful? also what side effects have you noticed with this medication?

    thanks for your answers, everyone here has been so friendly and helpful. i just wish we didn't have to meet because of MS.
    dx: RRMS 9/8/11 copaxone 12/5/11

    #2
    Hi meegun

    so far the only testing that she has done is MRI's with and without contrast. she offered me a spinal tap and i asked about evoked potentials, but she said that neither test would really offer her any more definitive information. she said there is nothing else that she can think of that would cause me to have these lesions. while i am not necessarily doubting her dx, i just wonder what you guys think. is she being lazy about my dx? the MS society diagnosing criteria includes evoked potentials and lumbar puncture. she said that at any time if i wanted to do these tests that she would order them but felt they were unneccesary. should i get them anyways? or is brain and spinal lesions the smoking gun, so to speak for MS?
    From the National MS Society website:

    In order to make a diagnosis MS, the physician must:

    Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

    Find evidence that the damage occurred at least one month apart AND

    Rule out all other possible diagnoses


    I'm wondering about the last one, have all other possible diagnoses been ruled out?

    Take care,
    KoKo
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Hello, meegun.

      Exactly one year ago I was dx'ed with same symptoms like you have (tingling in hands&feet, l'hermitte's) with similar lesions you have (3 brain&3 cervical) at the age of 27. I had LP + evoked potential and both showed nothing extraordinary. It's been 6 months I'm on avonex and don't know if it's been any useful. Never had any pains during injections except that flu like symptoms (especially fever&fatigue which last around 20 hours).

      Actually I don't have much to offer you at that point but just wanted to tell that I can understand what you feel.

      Take care.
      Just a dream and wind to carry me, soon I will be free...

      Comment


        #4
        Well, first things first.
        Sorry you're here but welcome to the club.
        -With the LP (my non-medical opinion). They've been doing them for a while and they're considered routine BUT they're still a VERY invasive test and there's that small chance something could go wrong. I had a second Neuro start yelling about me getting an LP done a couple of months AFTER I started my DMD med. I asked my first Neuro why I needed the test if my cranial MRI was lit up like a pinball machine (it took me a long time to get diagnosed, 8 years, because I was dealling with some real goofballs before I found the right Dr.) and I was already being treated? She agreed and we were able to call it off.

        Sadly, "the MRI don't lie" but it sounds like they've caught it early and your odds of being treated effectively are pretty good. It can take a while to get to that Acceptance phase and there's no hurry, but eventually you should learn all you can about what MS really is and how it operates. For now, I'd advise learning how to reduce stress and anxiety. MS doesn't happen because of any choices you made or didn't make, what you ate or didn't eat or how you live your life. It just kinda shows up out of the blue- like an old room mate who wants to crash on your couch.
        So far, your Neuro sounds cool. You really should talk to them about your medicine choices and lifestyle issues. Try to get them to discuss all the meds and their ups and downs. Don't sweat having to do shots, they get really routine really fast if that's where you're going in terms of a med. Many of us do them and we might be able to throw you some tips from time to time.
        Definatly stick around here or drop by from time to time. All of us really do learn from each other.

        Comment


          #5
          MRIs can be pretty conclusive. I just asked my MS specialsit if those lesions could be anything else, and he said at this point, after following me and my MRIs for 2 years, the answer is no. It can only be MS.

          As far as enhancement, that indicates active lesions, so yes, sometimes (most of the time?) treatment is indicated if you light up. My lesions have never enhanced.

          As far as medication, I was on Rebif, and it made me feel lousy. I think Copaxone probably has the least side effects as far as how you feel. People complain about skin dents from injections, but not about feeling sick. Copaxone is an amino acid. Rebif and Avonex are interferons, and tend to make people feel lousy.

          Hope this helps....

          Comment


            #6
            I don't think the rest of the tests are needed..the international ms diagnosing guide says those test are available and should be used when there is doubt of the ms diagnosis. the 2010 mcdonald mri diagnosing criteria says that time and space must be meet..having lesions in both brain and spine proves space & having an enhancing lesion with non enhancing lesions proves time as they could not have occurred at the same time. by the mcdonald mri diagnosing procedure it is "laboratory definite ms".

            it would become "clinically definite" ms with a second episode... or anicodtal evidence of a past episode.

            copaxone seems like a very wise choice for you, while you are taking tests and being graded at school...no time to be "off color with side affects"
            copaxone has the least side affects...the once a week Intramuscular avonnex sounds like it would be less disrupting, it only once a week, but often people have side affects for a day or 2 after the shot..so you can take your shot on friday, be back up to speed in time for lectures on monday, but side affects may make it difficult to study over the weekend which is time you need while in school...

            and you are not stuck with whatever you do decide, it can be changed in the future as the needs of you ms change.

            imo-glad your done with uncertainty you feared.

            ps--to bounce off lemstar's reply...
            the interferons are cytokin molecules. thay are the molecules the immune system uses to identify invaders and attack them. the immune system attacks invaders by causing flu like symptoms..when you get an actual flu virus its actually your immune system fighting the virus that causes the sore muscles, raise in temperature, ect.

            so the interferons are extra cytokin cells, they treat ms by making the immune system too busy attacking these fake alarm cells to attack the myelin that it is attacking incorrectly. its why the interferons cause these side affects of flu like symptoms..which wear off for most after a while when the immune system realizes they are not "real alarms" needing flu like symptoms activated. so the side affects wear off after a while, but you need to allow these side affects to wear off during your last semester of school when each test/grad is so important? and each month can really ruin a gpa.

            copaxone-is different from the interferons--in that it is fake (decoy) mylen cells for the immune system to attack instead of the real myelin & it does not cause the side affects that the interferons cause.

            i learned the difference between the 2 when i read the book.. Woman and Autoimmune Diseases, The mysterious ways your body betrays itself by Robert G. Lahta MD, PHd with Inva Yalof

            no one really ever know how any ms med will work for them until the use it..and if a glutimer acitate(copaxone) does not work for you it is easy to switch to an interferon or something even stonger than an interforon..some doc;s are skipping the interferons to go directly to a something stronger.....

            copaxone works in the nervous system by building up these fake mylen cells and the interferons work by modulating the immune system...

            but all the new drug development have function in the immune system, so some doc's are skipping the interferons at 30% effective and going to meds that work in the immune system that are 50-60 % and soon 80% effective(with greater side affects than 30% interferons, some very dangerous side effects)...first trying to treat ms in the nervous system. to cross that ms treatment of the list...

            and for some, treating ms in the CNS works for them for a long time, if not for the duration of their MS....for you that treatment plan gives you the ability to avoid the side affects while you are in school, studying, taking test, being graded. where a month of feeling "off" while the side affects wear off can seriously affect your grade during the semester, the final semester that future employers may place greater emphasis on.

            your doc has had to go through a large amount of schooling to get where she is and is very sensative to your needs right now. i imagine that is another reason she advised you to start with copaxone, now. besides the fact that she might skip the interferons altogether if copaxone functioning in the CNS is not effective enough for you.

            copaxone seems like a good choice for your life style. with MRI's meeting the McDonald MRI diagnosing criteria so clearly and with you being so young there are fewer MS mimikers to rule out. i don't think you need the additional MS tests.--they are to suplliment when the mri more ambiguous.
            xxxxxxxxxxx

            Comment


              #7
              I agree with lemstar - Copaxone would be the choice that would cause less....interference with your daily life.

              As far as diagnostic criteria go, my neuro insisted on the LP, but said he was "99% sure" that it was MS prior to the LP. As far as I know, as long as you've had more than one episode, and it is evidenced by MRI findings, you can be diagnosed with certainty.
              Diagnosis: May, 2008
              Avonex, Copaxone, Tysabri starting 8/17/11

              Comment


                #8
                Hi, Meeegun. Welcome. Sorry to hear your news but if it's a certainty then this is THE place to be. The people here are so understanding and helpful.

                I got my dx on Wednesday after almost 7 years of symptoms. And I think I had every test imaginable; MS-specific optical exam, ambulatory EEG (4 days-worth), MRI (11 lesions), circulation tests, nerve conduction tests and yes, a spinal tap.

                Everything my neuro tested for indicated that I didn't have what was tested for and the LP wasn't conclusive. However, with the symptoms (pain/numbness/burning in my feet, "word drop", balance issues, equilibrium problems and the brain lesions, the doc was pretty convinced.

                Sorry, I'm dragging this on... If your insurance will cover it, I would have the LP, but tell your doc you want it done at a hospital, under a floroscope. Also, tell him/her you want a sedative to calm your nerves upon arrival at the hospital and you want the Demerol cocktail injection in the hip prior to the procedure. Just before the procedure, your back will be sterilized and you'll get a another injection (lidocane) at the LP site. No discomfort after that...honest!

                The best to you...and don't be a stranger. Let us know what's going on.

                And may God bless...
                "Tona Naze"
                Symptoms for six years plus. Dx RRMS September 2011. Drugs??? Nope!!!

                Comment


                  #9
                  sorry, but i am happy you found us! the only sx from copaxone (for me) has been a slight site reaction. most of the time, i don`t even notice. good luck.
                  hunterd/HuntOP/Dave
                  volunteer
                  MS World
                  hunterd@msworld.org
                  PPMS DX 2001

                  "ADAPT AND OVERCOME" - MY COUSIN

                  Comment


                    #10
                    Originally posted by meeegun View Post

                    1.) she also thinks that i may have had my first flare at 12 when i experienced a strange headache that eventually led to visual field cuts (i could only see parts of words on a page) and near blindness. this lasted for about half a day and then resolved. i had a similar episode at 25 but i just thought they were migraines.


                    2.)there was one lesion that is currently enhancing with the contrast in my brain. does that mean i am having a flare? or is that just something that happens all the time with MS? i have been reading up on steroid use for controlling the inflammation brought on by active lesions.

                    3.) should i ask about a round of steroids? or is it more based on symptoms since it just speeds up recovery and plays no part in how much demyelination occurs?

                    I quoted the parts of your post i wanted to answer with my understanding---now if i can just remember them.

                    1. an exsaserbation = flare = relapse means same thing.

                    the definition of a relapse is new or worsening symptoms lasting at least 24 hours. so if your headache only lasted for a few hours it would not have counted as a past exasperbation, relapse or flair. if you inability to recognized the end of words lasted for 24 hours it could have been a past relapse....there are also proximal symptoms that happen for only a few minutes/seconds but they happen repeatedly over a 24 hour period of time...the ms hug is one such symptoms or seeing flashing lights for a few seconds at a time but happening repeatedly over at least a 24 hour period of time. your headache as a past ms relapse that lasted for a few hours would not meet the definition of a relapse but if it happened repeatedly over a 24 hour period of time it could have been a proximyl symptom of MS....

                    when i was diagnosed, it was a surprise i did not expect it. i kept asking the doc when i should have known something was wrong. he answered "there is absolutely no way to diagnose the past in the present, it might have been ms and it might have been whatever you thought it was in the past. we will never know now what it was"
                    and even when i went to my 2nd neuro i was still questioning when i should have known & how not knowing sooner might affect me? she answered..." i don't treat the past, i don't treat the future, i treat the present"

                    and presently you firmly have laboratory definite ms - if your back problems were actually caused by ms--which the probability is greatest that it is from ms given your thoracic lesion & no other better explanation for it. close enough to laboratory definite ms.

                    the clinical definite part is less clear, given there is no way to diagnose the past in the present...but ms meds do not cure, they slow down ms--so even with treatment you should have another relapse or lesion if it is truly ms.
                    i think the parameter of time is not given enough importance on message boards....once you doc has diagnosed you the diagnosis never stops, he will be looking for behavior consistent with the disease of MS over time....another fact that lemstra pointed out in her very important reply. now that you are diagnosed and started treatment the disease should behave consistent with the disease it has been assigned to it over time.
                    time is the most important parameter & your doc will be watching that always, it doesn't just stop at diagnosis.

                    2. i always thought an enhancing lesion meant a relapse or an exaserbation of the disease of ms.
                    an enhancing lesion means it is an active lesion and newly forming--that would seem to me to be a disease exaserbation of ms. for every 1 lesion causing symptoms there will be about 12(?) lesions that don't cause symptoms they are "asymptomatic lesions" . they occur because there is so much unused brain tissue in the human brain for lesions to form asymptomatically. and the brasin bein very plastic is able to route around lesions when extra unused brain tissue is available for re routing...over time a build up of lesions reduces the extra brain tissue available for re routing...why the meds seek to reduce lesion load keep extra brain tissue available for re- routing..

                    3. Steroids have an optimal. too much steroids weakens bones and teeth, messes with blood sugar, and the stop working after repeated use...the final outcome of a relapse is not changed by use of steroids, but does improve a persons life by speeding up recovery and making the exaserbation less severe...

                    generally if a person life style is not greatly affected by the relapse, it is better to save their use for relapse that do greatly affect a persons lifestyle.

                    i read this website that said the cells that renylenate, olig. cells can be damaged and work less efficiently over time if they are in inflamation for a greater amount of time.

                    so there is an optimal to steroid use...keeping the olog. cells healthy enough to remylanate needed function but not using too much tat steroids stop working or bones become very weak.

                    read the website--it seemed to me that a relapse effecting the same nerve multiple time would be more important to use steroids, because that nerve had spent a greater time under inflammation and a nerve very important to functioning, like vision, would be more important to use steroids---just seems like at times the doc is adamant i use steroids and other times not concerned that i do...this was the best explanation i could find for his behavior...

                    http://www.mult-sclerosis.org/howms.html
                    xxxxxxxxxxx

                    Comment


                      #11
                      I'll keep it short:

                      If lesions show up on enhanced, I believe it shows current inflammation, indicating you've had a relapse in the past 2 weeks. It's fresh activity.

                      Copaxone has the fewest side effects if you can tolerate the injections. Avonex has the highest side effects, but the lowest site reactions. I would start with Copaxone. The damage isn't always visible and may catch up with you later if you don't start on medication.

                      This is a great guide to understand when you're having an exacerbation or not:
                      https://www.virginiamason.org/workfi...acerbation.pdf


                      I also reccomend diet and exercise for all newbies. Here's the site I follow.

                      http://www.overcomingmultiplesclerosis.org/

                      Good Luck.

                      Comment


                        #12
                        Originally posted by 0485c10 View Post
                        I quoted the parts of your post i wanted to answer with my understanding---now if i can just remember them.

                        1. an exsaserbation = flare = relapse means same thing.

                        the definition of a relapse is new or worsening symptoms lasting at least 24 hours. so if your headache only lasted for a few hours it would not have counted as a past exasperbation, relapse or flair. if you inability to recognized the end of words lasted for 24 hours it could have been a past relapse....there are also proximal symptoms that happen for only a few minutes/seconds but they happen repeatedly over a 24 hour period of time...the ms hug is one such symptoms or seeing flashing lights for a few seconds at a time but happening repeatedly over at least a 24 hour period of time. your headache as a past ms relapse that lasted for a few hours would not meet the definition of a relapse but if it happened repeatedly over a 24 hour period of time it could have been a proximyl symptom of MS....

                        when i was diagnosed, it was a surprise i did not expect it. i kept asking the doc when i should have known something was wrong. he answered "there is absolutely no way to diagnose the past in the present, it might have been ms and it might have been whatever you thought it was in the past. we will never know now what it was"
                        and even when i went to my 2nd neuro i was still questioning when i should have known & how not knowing sooner might affect me? she answered..." i don't treat the past, i don't treat the future, i treat the present"

                        and presently you firmly have laboratory definite ms - if your back problems were actually caused by ms--which the probability is greatest that it is from ms given your thoracic lesion & no other better explanation for it. close enough to laboratory definite ms.

                        the clinical definite part is less clear, given there is no way to diagnose the past in the present...but ms meds do not cure, they slow down ms--so even with treatment you should have another relapse or lesion if it is truly ms.
                        i think the parameter of time is not given enough importance on message boards....once you doc has diagnosed you the diagnosis never stops, he will be looking for behavior consistent with the disease of MS over time....another fact that lemstra pointed out in her very important reply. now that you are diagnosed and started treatment the disease should behave consistent with the disease it has been assigned to it over time.
                        time is the most important parameter & your doc will be watching that always, it doesn't just stop at diagnosis.

                        2. i always thought an enhancing lesion meant a relapse or an exaserbation of the disease of ms.
                        an enhancing lesion means it is an active lesion and newly forming--that would seem to me to be a disease exaserbation of ms. for every 1 lesion causing symptoms there will be about 12(?) lesions that don't cause symptoms they are "asymptomatic lesions" . they occur because there is so much unused brain tissue in the human brain for lesions to form asymptomatically. and the brasin bein very plastic is able to route around lesions when extra unused brain tissue is available for re routing...over time a build up of lesions reduces the extra brain tissue available for re routing...why the meds seek to reduce lesion load keep extra brain tissue available for re- routing..

                        3. Steroids have an optimal. too much steroids weakens bones and teeth, messes with blood sugar, and the stop working after repeated use...the final outcome of a relapse is not changed by use of steroids, but does improve a persons life by speeding up recovery and making the exaserbation less severe...

                        generally if a person life style is not greatly affected by the relapse, it is better to save their use for relapse that do greatly affect a persons lifestyle.

                        i read this website that said the cells that renylenate, olig. cells can be damaged and work less efficiently over time if they are in inflamation for a greater amount of time.

                        so there is an optimal to steroid use...keeping the olog. cells healthy enough to remylanate needed function but not using too much tat steroids stop working or bones become very weak.

                        read the website--it seemed to me that a relapse effecting the same nerve multiple time would be more important to use steroids, because that nerve had spent a greater time under inflammation and a nerve very important to functioning, like vision, would be more important to use steroids---just seems like at times the doc is adamant i use steroids and other times not concerned that i do...this was the best explanation i could find for his behavior...

                        http://www.mult-sclerosis.org/howms.html
                        Awesome post,and i have a question for you. Last week had a u.t.i. and all that it has 2 offer with ms....increase in numbness,cogfog,vertogo,blah blah blah. Anyway,i also developed new sx with this u.t.i. Left arm and leg nerve pain. Uti and pseudo-flare gone,however,still have the left side nerve pain. It's not driving me crazy,i can tolerate it with meds,and i agree with limiting salumedrol use. So,do i rrrrrrrrrrrreallly need to make this new and lasting sympton an issue? your thoughts please.

                        Comment


                          #13
                          Briefly, my 2 cents...

                          Sounds like a DX to me. A lumbar puncture was not painful, but not fun either. I had disorientation and nausea from mine, but other people don't. Well, a positive LP would be the final nail, so if you're really curious give an LP a shot. A positive result would remove all doubt, but a negative one would leave you wondering.

                          Evoked potential tests are going to be done from time to time to track progression, so I wouldn't worry about that today.

                          Start a disease modifying drug. I use betaseron with no ill effects. Your mileage may vary.

                          Sorry about the DX....

                          You need time to deal with this and to come to terms with it. Time will help... I had many horrible thoughts when I got the news of my DX. In the span of just four days, a spectacular trip to Disney World and concierge service at the Grand Floridian came to an abrupt end with numbness from the chest down and hospitalization. Within 1 hour of the emergency room, a neurologist on call immediately recognized the symptoms and prepared me for the likely diagnosis.

                          In time, you'll come to terms with this. Don't be afraid to seek help and counsel.
                          Diagnosed October 2008 with Relapse Remitting MS (RRMS).

                          Comment


                            #14
                            Hey meeegun -

                            I was recently diagnosed as well. I did not have a LP, which I was pretty happy happy about. I did have a MRI of my brain and spine and the VEP. They found about 9 lesions in my brain, 1 active, but they thought 1-2 of them may be from migraines bc they were tiny. They also tested me for everything else under then sun...lupus, lyme, vasculitis, b-12 def, etc...all were negative.

                            They use steroids only if it's needed...if you are not having any huge symptoms they will probably not suggest steroids. I had a ton of steroids because my first attack was a biggy. Steroids bring on their own fun (bloating, insomnia, hot flashes...), so I wouldn't take them unless you have to. Either way, at the end of the day they just speed up the process of healing/anti-inflammation. Basically, you won't have any more damage done by not taking them.

                            My neuro also suggested going on medication, but left it up to me and they gave me basically a tour of all of them. These forum sites were the most helpful for me though, the real life suggestions The people that know the most about MS and meds are right here.

                            I chose Rebif. I think so far I have been one of the lucky ones because I have had no side effects yet or noticed (hold on, got to go find the wood to knock on!) and I have been on it for 2+ months. This may have helped because my neuro also titrated me between the 22mcg and 44mcg. I basically started from 8 mcg to 22 mcg to 33ish-mcg to 44 mcg. Which I think helped.

                            Copax on the other hand people seem to have the least amount of problems with. So it won't effect your daily life with flu-like symptoms. So maybe that is a great choice for you.

                            I almost went on Gilenya but I am giving Rebif a shot (no pun intended ) first since Gilenya is so new.

                            You will get used to the injections and how to give them so they are more comfortable. I am a wussy with needles too so if I can do it anyone can. For me, I just go slow and do not use the auto-injector. I also put a warm wet washcloth on the site before and after the shot which helps me. Others have no issues with the injections at all. It took a couple weeks to get used to it but now it is not bad at all really.

                            I have heard that the IM injections do not hurt any more or less than the others if you chose Avonex. But that is not from first hand experience.

                            Hope that helps!
                            dxd RRMS 7/2011 - Rebif 8/2011 - Tecfidera 7/2013

                            Comment

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