Multiple Sclerosis

  • Posted by a hidden member.
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    Aug 26, 2011 3:04 PM GMT
    This is a little bit of a heavy topic on a Friday but I really need advice.

    For the past year, my younger sister has been suffering with dizzy spells and fatigue. Her doctor initially thought it to be Vertigo and treated it as such. But, it went from bad to worse. She had to stop Cheerleading because the tumbling was making her way dizzy. The headaches were terrible to the point that she would cry. She can't put her head underwater and showering has become an everyday struggle. She had to quit her job that she's held since she was 16 (she's 20 now) because the dizzy spells and she felt overwhelming headaches whenever she had to take a test at school because she had to put her head down to look at the paper.

    After several tests and Doctor visits, she was finally diagnosed with Multiple Sclerosis last week. We were shocked even though the Dr. said that it could be a possibility. We were given a book about the disease and I'm in the process of reading it now. She has good days and bad days. On the good days, she can maybe drive around for a little, come downstairs and cook (one of her favorite hobbies) or look after our nephews. On her bad days, she can't even walk down the stairs without getting a pounding headache before taking the first few steps and is stuck in her bed because it's too much for her. She went from being a bubbly cheerleader, a strong, independent hard working employee, serious student and loving personality to being severely depressed, forced into bed for days and losing 22 lbs. It kills me to see my baby sister this way. We as a family are trying to remain positive around her and encourage her not to mope around, but thats obvioulsy easier said than done.

    She's really close to my youngest sister, but she left today for college. I know she's upset about it because my sister hung out with her everyday and helped her when she needed it. I moved back home to do the same thing while my sister is away at college. But I'm also in the process of finding a job and scared of leaving her by herself should she need it because there are days when she can't even bend over to pick something up. She also allergic to many of the medications she's been given.

    My question is, who here has dealt with something as severe as MS? What did you do? Was there anything you did that helped you stay active? How did you deal with the bad days besides staying in bed all day? What alternative medications did you take if you were allergic? What was your diet like? Are there any support groups available? There's just so much to look up, research and try but it's overwhelming. Any piece of advice would be helpful. We're really trying our best for Jay, and I'm willing to try anything to help her.

    - FernRock
  • paduk

    Posts: 58

    Aug 26, 2011 9:16 PM GMT
    A friend of mine was diagnosed with MS a few years ago.
    I know he has been since on a medication called interferon and at the very beginning he was reacting badly to it as he was suffering from like flu symptoms but after a few injections and the use of some other drugs (I am not sure here about the name but they were some sort of analgesic) he could deal with it. Has she tried out all the medications available? I remembered he tried out different ones.
    When MS is not flaring up he does go the gym I know he does yoga for relaxation and sometime weights lifting.
    I think the main support organization in the US is the MSAA but I would suggest to find a local one so when she feels better and ready she can go and meet other people but be sure she is ready for this as it can be quite a traumatic experience to meet people whose condition is worst than yours.
    Sorry can't say anything more than this really.
    Suffering myself from a chronic condition I can tell you what did help me was:
    - having a few chat with some psychologists with a bit of experience dealing with physical chronic conditions
    - changing the things that were stressing me out
    - taking my drugs
    - understanding how my body reacts to different stimuli, being them food, stress, exercise, drugs, etc it takes a while and a few mistakes

    Hope this help, I know it is not much.
    Best of luck to your sister and you.

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    Aug 29, 2011 9:37 PM GMT
    I was diagnosed with it in 2008. It started out with a really bad headache on the left side. Id get really dizzy and tears would uncontrollable pour from my left eye. a headache so bad id be in bed days at a time. ended up in the emergency room twice. Then came joint pain and vertigo which can be a symptom of ms. I was finally diagnosed in 08 as having ms. most of my symptoms is vertigo and leg and feet pain. I work as a massage therapist so ive been lucky so far it hasn't effected my arms or hands. Currently im not taking any meds due to lack of insurance. MS is a very expensive disease to have. for a while I was on a injection of copaxone which helped but had to stop due to not being able to afford it
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    Aug 29, 2011 9:42 PM GMT
    My mum was diagnosed with MS about 2.5 years ago in her 50s. Alongside monthly drug infusions shes tried oxygen therapy with a hyperbaric chamber, great success with chiropractic, and is now trying the SWANK diet, its bascially a low inflammatory diet, and she hasnt relapsed since the original diagnosis. Its hard not to stay positive, but there is a lot of support out there
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    Aug 30, 2011 12:40 AM GMT
    Sorry to hear about your sister. There are support groups for almost everything out there,, for the person suffering and the persons family. Look thru the yellow pages or online for a group near you and go see them for your own sake as well. That's what they are there for, take advantage of it..