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  • jenngarri
    Hi Guys,

    I am new to this MS thing!! I was diagnosed in mid Sept and have been on Gilenya for 29 days. I honestly feel worse now before I was on meds. The new thing is lower back pain. It is like a stinging sensation that goes down my left leg. And I am also having neck soreness. Also sensory issues in both arms which is nothing new. 

    Will I see some improvement once the drug gets into my system. Or is it just not working. I have another appointment with my MS Specialist on Jan 6. I was on IV steroids about 3 weeks ago so they will not put me on them again at this point.

    Just having a tough time adjusting and figuring out what symtom is MS...not MS..when will I feel better!! I was thinking about going to see a Chiropractor for the back and neck issues. 

    Thanks so much guys......I appreciate all the advice!! Such a baby and a newbie at this point!!

    Jenn Garrison
  • MS_Navigator_Steven
    Hi Jenn,

    This is Steve with the National MS Society.

    I'm glad you found this site!  I wanted to provide you the following link which will take you to information from our website for someone with a new diagnosis of MS.  I would also like to encourage you to contact our Information Center at 1-800-344-4867 should you have any questions or would be interested in hearing about our support programs and services.  

    http://www.nationalmssociety.org/Symptoms-Diagnosis/Newly-Diagnosed

    Take care!

    Steve
  • lizzybell
    I was dx last year.... even on the medicine i continued to feel awful for 4 mos.. slowly getting better. And then feel bad for a few days. the worst is the fatigue and  leg pain that often wakes me up.i know youre overwhelmed. I still think about it everyday.  feel free in inbox me for more info. i am on Gilenya also. my third medicine. we are the same age.....

    laura
  • beaurylancambria
    MS is different for everyone, therefore your plan of attack will also look different. You learn as you go. You will find certain things will trigger certain symptoms. You have never had MS before so you are not being a baby, It took me almost a full year to learn what works for me. Be patient with yourself, you will figure it out.
  • robertjon
    Jenn, I'm going to share my understanding of MS medication. First of all, I've been on Rebif for 6 weeks. I feel just as lousey as I did before starting the medication. I believe the medication makes more time between lapses and shorter less sever lapses, giving the body the ability to heal what it can. Symptoms will come and go, unless new or old symptoms continue for more than 3 or 4 days it doesn't neccessarly mean your having a new episode. Be sure to keep in contact with your neurologist. My roommate asked me if now I'm on medication if my balance and slow walk with a gait will get better. No, it doesn't work that way. Physical Theoropy has helped my balance and walk alot. I'm seeking help from the U.of W. MS center in Seattle, WA for my cognitive problems caused by MS. There is life after MS diagnoses, thou it may require some changes for relearning and connecting things in the head differently. Medication will delay progression of the desease as much as possible, everyone being different, nothing etched in stone. I look at my spelling and can clearly see it's terrible. That's part of my cognitive problems, I didn't use to be illiterate, I use to be able to spell and talk intellegently. I wish you the best, Jon
  • Avatar
    I know all too well about balance, coordination, and gait.  I've taken physical therapy four different times.  I think I will always have that funny walk, but it is important to at least try and everybody needs the exercise.
  • Avatar
    I think it takes a bit for the medicine to get into your system.  I have lower back pain myself, very painful, but never sure if it is my bad back or my MS.  Anyway, your neurologist will probably prescribe a pain reliever like Gabapentin to help with your symptoms.  
  • yennibear780
    Give it some more time. I responded excellent to this drug. After 2 years I have no new lesions. The only thing that I don't like about it was that it affects my liver where the other medications did not. They've always told me to give new medications 6 months to see how it works.
  • yennibear780
    Give it some more time. I responded excellent to this drug. After 2 years I have no new lesions. The only thing that I don't like about it was that it affects my liver where the other medications did not. They've always told me to give new medications 6 months to see how it works.
  • yennibear780
    Give it some more time. I responded excellent to this drug. After 2 years I have no new lesions. The only thing that I don't like about it was that it affects my liver where the other medications did not. They've always told me to give new medications 6 months to see how it works.
  • yennibear780
    Give it some more time. I responded excellent to this drug. After 2 years I have no new lesions. The only thing that I don't like about it was that it affects my liver where the other medications did not. They've always told me to give new medications 6 months to see how it works.
  • yennibear780
    Give it some more time. I responded excellent to this drug. After 2 years I have no new lesions. The only thing that I don't like about it was that it affects my liver where the other medications did not. They've always told me to give new medications 6 months to see how it works.
  • HarshBear
    I have had MS for 11 years and have tried 5 MS meds. Unfortunately my body has been unable to handle the side effects to 3 and I'm allergic to 2! Anyway, this has forced me to get creative. While waiting for the meds to help, have you tried acupuncture? My neurologist highly recommended it and I swear by it! Also, diet is controversial because of its lack of research but I have been on the anti-inflammatory diet for 7 years and really feel it helps. Dr. Terry Wahls also just got a grant to study diet, so hopefully there will be more reliable information to come, but I do follow Wahls Protocol level 1 as well. 

    Hope this helps and good luck!