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  • Goodie

    Heya Michelle here,I'm new here as well and am so appreciating everyone's input & ideas THANK YOU ALL...I have been taking multi vitamins which seem to be helping a bit with some symptoms & I really like the idea of not having to take pills etc as I would rather take a more natural approach to this terrible disease,I've read that Eastern medicine is a good way to go rather than Western?? Interested in your thoughts on this??I am not taking anything else apart from the vitamins & ibrufen or nurofen but sumtimes this does nothing for my pain! I am still going through the motions of finding a "good" MS specialist as I have not long moved to Aus...any suggestions would be much appreciated...bless you all take good care ;) keep positive

  • dwndvdsn

    I have issues with dizziness and use over the counter med for motion sickness it helps but it is not perfect. I understand not sharing right away, but you might try and find a support group or even a counselor so that you can get some support while still maintaining some privacy. It is always wise to share new symptoms with your neurologist right away so that he / she can perhaps suggest a solution or have an opportunity to have tests ordered , if necessary. And it is also wise to have any testing you have done sent to them also so that they can have a more complete picture. Always when you seen' t sure if u should share it do so... you never know what could be important.  Also understand that the therapy your neurologist puts you on could potentially improve your m.s. experience. You never know. Feel free to write or share as much as you want if you wish.  :)

  • eternalsunshine

    Hi, I just joined the group..as I just found out I have MS about a month ago. I'm still dealing with a lot of the stages of greif I guess about it, I think I'm almost to acceptance...I just felt really connected to your post as I have been upset that I can't think as clearly as I'd like about abstract thoughts- like I can carry on a conversation and do most everything again now, but I can't plan my day and get distracted sooo easily and my brain just goes blank on certain things. I noticed you posted this a while ago now and wondering what happened with it? I noticed that if I calm down and stay away from stressful situations and drama it helps, also the more time passes since my first "episode" the better it has gotten, but I'm an artist so it's really difficult that I can't think about art...any suggestions appreciated. Is most everyone taking ADD medicine for this? I've been considering it lately. Also going in for a coginitve test with the doc. soon. Just so hard when no one else understands what's going on inside your head, thankful to have found this group.

  • capitolcarol

    Hi, welcome.  It's really hard to  make it through some days.  Make lists, those help when our minds are in a fog.  I haven't heard about a cognitive test, is that to measure one's cognition.  Let us know how that turns out.  I think most of us are on different drug treatments. I'm part of the Tysbari group.  We'll be here for you.

  • sarahsmom

    eternalsunshine wrote:

    Hi, I just joined the group..as I just found out I have MS about a month ago. I'm still dealing with a lot of the stages of greif I guess about it, I think I'm almost to acceptance...I just felt really connected to your post as I have been upset that I can't think as clearly as I'd like about abstract thoughts- like I can carry on a conversation and do most everything again now, but I can't plan my day and get distracted sooo easily and my brain just goes blank on certain things. I noticed you posted this a while ago now and wondering what happened with it? I noticed that if I calm down and stay away from stressful situations and drama it helps, also the more time passes since my first "episode" the better it has gotten, but I'm an artist so it's really difficult that I can't think about art...any suggestions appreciated. Is most everyone taking ADD medicine for this? I've been considering it lately. Also going in for a coginitve test with the doc. soon. Just so hard when no one else understands what's going on inside your head, thankful to have found this group.

    Hi Eternal Sunshine... Our daughter, 35, was just diagnosed and will start Tysabri in a week.  Are you on any medication or alternative therapy?  Thank you.. <<hugs>> to you.
     

  • marlinda

    To help with personal worry I  suggest listening to "How your brain can turn anxiety into calmness" on youtube (http://www.youtube.com/watch?v=KYJdekjiAog).

    Somehow it has helped me more than antidepressives.

    Hope it helps! 

     

     

     

     

  • billybonza

    ...... and you have every right to feel that way and more. 

    When I was diagnosed on 6 April 2013, I had also been diagnosed with adult ADD 6 years prior and so I was/am already prescribed Dex for that and I can say without reservation that medication and only that one has afforded me every ounce of hope I hold onto. It allows me to still live!

    After diagnosis, I didn't receive any medication at all until 24 January 2014, 10 months later. Not even a 3 day course of methylpred. This is because every doctor I saw in those 10 months from GPs to ophthalmologists and even my first neurologist failed me as a patient, horribly, in my opinion. My first neurologist I fired because he was promoting or should I say 'pushing' Gilenya and only Gilenya as a medication? I resisted because I felt as though I was being bullied into just doing whatever he was saying without question or understanding. I asked him what other options I had with regard to medications and he said if that's what I wanted that would be fine but he would just have to refer me on to a different neurologist to manage me from there. I stressed that I just wanted to understand all this new madness and make an informed decision. Unreasonable right?He said If I thought I knew better than him then fine it was my choice and he said if he was in my shoes Gilenya is the medication he would be on. I also suggested to himat that point that he was receiving some sort of financal or other benefit (career based reconition) for operating as he was and it was unconscionable. He said "that's the way the world works". Yes I would swear an affidavit as to those statements as direct quotes, amongst others. It was another 7 months before I got to see a second neurologist.

    I must say however, my neu neurologist (funny) was very good on the one occasion I met him. There is not a negative word I have concerning him. He was thorough, allowed me time to speak and just try to be heard and understood properly for once. It was a real interaction and a positive one. The result was, being prescribed with Tecfidera which I have now been taking for nearly 3 months without a hitch really. Except the big hitch that you would only become aware of after conducting fairly extensive research, which is Dimethyl Fumarate can cause some potential health concerns of its own in rare cases, more serious than MS even and not rare enough for my liking. None of the standard propaganda you receive will tell you that. I only know that becuase I stumbled across a transcript record of a second review meeting of the FDA when it was considering the application for approval of the drug for MS.

    My symptoms since onset have been many and life changing and my condition has deteriorated considerably over the last year. But I am still here and they'll all have to try better again this year!

    My symptoms have been mainly, chronologically: Optic Neuritis (blind in the right eye for 6 weeks), numbness particularly in hands and legs, muscle cramps (horrible, basically daily, never goes away, sometimes I cant drive because of cramping in my back and neck), lots of strange pain that comes and goes and a burning sensation on the skin particularly all over my back and the back of my arms, instances of both bowel and bladder concerns, OVERHEATING!, cognitive disturbance at a serious level and terrible memory loss and irritability (I literally walk from one room to the other or go outside to do something or go to the shop for something and I cant remember for the life of me what I was even doing or why I am there?). There have been periods where I never thought I was getting out of bed again. I was a paralegal my whole career, my mind and my language both written and verbal were my weapons, my tools of my trade. Now it takes me an hour to write a paragraph and I stutter a little half the time. Generally people dont think about or realise but my work was a part of me. Its not what I was, but it was a considerable part of who I was because I did it every day, for way too many hours every day and I was as good as they get. That's over. I had a support system, they all ran away?

    Please understand also that completely aside from MS, the last year of my life personally has been nothing but a consistant and painful series of unbelievable disappointments that having MS honestly faded into the background a lot. I am not exagerating or saying that as a bad joke even I actually wish I was. 

    But even in what i just said in the paragraph above may be the answer to your question. Life will go on no matter what and you will feel weird now starting to think so differently from only a very short time ago but everyone else will still be and think and go about there days just eaxctly as they had before. I hope very much you find your own way to cope by doing exatly that, just coping and then hopefully building to the stage of enjoying and loving life again with MS just in the background. It was essential for me to realise when I found myself at my weakest I had to be at my strongest and also to be pragmatic and clincal about most of it in terms of realising that my old life was no longer a proper fit for my new circumstaces and that Ihad to find equalibrium again between my circumstances and my path/desires/goals.

    PLEASE do one thing for me, for all of us? As best you can (and never give up trying), just live your life exactly however it is you want to and try to "accept the things you can not change" and not let anxiety or fear overwhelm you but rather the opposite, take it as your official sign to start having as much fun as you possibly can and do as many things as you love and enjoy right now as much as you can. Always take care of your health first but then fun and then if there's still time 'work', maybe. In this approach lies the true answer to your question, serenity. No matter how it unfolds for you if you can find and maintain peace of mind and be true to yourself in all you do then you will not just cope, you will florish and prosper. 

  • newlydxms

    I am newly diagnosed MS as of that week. Along with MS I have Fibromyalgia and Hyperparathyroidsm all which produce different variations of fatigue and pain. When I talked to the neurologist they said they want me to call them with any "new" or "different" symptoms that last more than 24 hrs. So I would say give em a call.

     

    Stacy B.

  • joynerthedad
    I haven't been on here in a while, but I do think your sign saying "I am not drunk' is wonderful. As far as coping, I think you have come to the right place. This place is a good sounding board of issues. (My personal feelings on calling your neurologist? Newly diagnosed, I would call with my concerns. The best way to learn what to call about and what not to call about is to call a few times and find out.) I do have a question for other people with MS and I have no idea where to put it - anyone using an iron supplement to help with leg aches and if so how much? Thanks, Joynerthedad
  • Lynx
    Awake through the night. This is where I find myself, awake, alone, thinking. My family is asleep and I await the crack of dawn. When I hear the birds begin to sing, I open the window and feel the cool night air on my face. The song of birds doing roll call leaves me refreshed and makes me feel alive. As the sun rises, I'll take a little nap. Fatigue and fear at night is a bummer. Birds in the early morning- when only I am awake- wow! This is a moment I savor. Had fatigue not become such a big part of my life, I may not have heard such a beautiful orchestra as the birds of early morning. Is anybody else awake at night? I'd like to chat.
  • maria1

    Lynx, I made the mistake of going food shopping hungry. Bought a bunch of chocolate and sugar and proceeded to eat plenty of it. So, here i am awake. Worst part is I know better. But every once in a while off the diet and good eating just to know what I am missing. giggle. 

  • refusetoquit

    Hi, love4leo, no one mentions vitamins....................the doctor won't......... all I know, is I've had a vitamin regimen for all 16yrs of my MS, except for a few months as the economy failed........thought  I'd save money. Within those three months my cognative symptom's were noticed. (trying to find simple word's and multitasking hard) Went back on my vitamin regimen and never noticed it again. That was 7yrs ago.

    Consider Omega 3's, D, and vit B's.......B50 to condense them. Of course there's more, but these are important for the brain. Book to consider, "The Wahl's Protochol"......this is eating for the MS brain. Her first book, "Minding my Mitochomdria" has more vitammins nut being a brain doctor she studied how to get nutrients in food. I continue my vitamins but am slowly learning how to incorporate my food for nutrient's.

    More power to you as you begin your journey!!

  • cdrom1313

    HI THERE ME, ALSO I AM NEW HERE JUST GOT DIAG, I DONT KNOW WHICI END IS UP EITHER, SCARED ANGRY, PISSED, DEPRESSED, ALL OF IT

  • capitolcarol

    Hi, we have all experienced the very same things,  We are here to help you.   Carol   

  • mrochon

    This "fog" happens to me a lot, particularly when my job becomes intense or stressful. I oftentimes will go sit somewhere quietly and close my eyes and meditate for a few minutes, sort of telling my body to get itself together so it can continue to get through the day. I'm not a big fan of medicating so I can't speak to that. I think it's important to learn how to connect to your body and mind. MS is trying to get in the way of your connection to yourself and it will, if you let it.  You're going to be okay. You're going to endure. You are stronger than you think you are, and when you don't have the energy to be strong, that's okay too. 

  • thole_4

    I'm a bit tardy to this conversation, but this has been an issue for me as well.

    Mostly at work is where it's an issue. So far, i've not found a way to cope so much as get by until a change happens and I can again concentrate. sometimes, even typing a text to my wife about dinner is more than I have the concentration for.

    I wonder, after all this time, what systems or tricks have you found to help?

  • love4leo

    I still have fog. And now I've got "mental chatter." My instructor thought that I was hearing voices. No, I'm thinking about three things at once and singing a song in my head. So yeah, I'm not paying attention in class. I was supposed to have a doctor's appointment today, but my neurologist is out sick (sick happens) so I'm going to have to reschedule--again. It's extremely frustrating, but not much that can be done at this moment. 

  • faustkatrina

    I tend to only have problems with concentration when I am fatigued.  Rest has been the one thing that always helps many of my MS symptoms.  Its hard to do when you are young and have so many things going on, but somedays you just have to make it a priority.  About once a week I come home from work and tell my boyfriend that I'm exhausted, going to shower, and going to bed.  After a year he understands now and just says ok and takes care of everything else.  My dizziness never lasted long so I have never had to take anything, thankfully.

    Hopefully, your loved ones can pitch in with things around the house to give you a break too.  Remember too that school will not be forever and do what you can when you can and perhaps let your professors know so they can help if you need extensions for assignments.  

    Good Luck and hope all goes well.

  • Roberta1025
    Personally I had problems with concentration and dizziness for two years, until my family doctor put me on Adderall which has helped me a lot. I do have days that my dizziness and concentration are a lot worse then others, but the Adderall help me function and worry less about the dizziness...
  • cindyc3

    Hi love4leo,

     

    I am a junior in high school and am currently working on a project in my Anatomy class. Each student gets "diagnosed" with a chronic condition, and so for the next three months, I will be doing research on what it is like to be living with Multiple Sclerosis and how to deal with the physical and emotional aspects of it. First of all, I really hope you are doing well despite everything that has happened.

     

    I was wondering if I could ask you some questions about MS and how things have changed since your diagnosis. My questions are below and I am looking forward to hearing from you! Sorry in advance if some of my questions are too personal; it is okay if you do not feel comfortable sharing.

     

    1. Aside from the relapses, how has MS affected your daily routine? Are there activities that you cannot do anymore because of MS?

    2. What kinds of nutritions do you have to look out for? Has MS affected your diet?

    3. How long do the relapses usually last for? If on medication/therapy, will relapses never occur?

    4. How has your physical and emotional state changed since your diagnosis?

    5. Have your life goals changed throughout these past few years? Has MS affected these goals and if so, in what way?

    Thank you so much for your time,

    Cindy

     

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