Invisible Symptoms in MS Part 1 - National MS Society

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  • katma 8 Eyl 2010
  • MS Learn Online is the National MS Society's online educational webcast series. This video features part one of a two-part discussion with Rosalind Kalb, PhD, who talks about invisible symptoms in multiple sclerosis. www.nationalmssociety.org/Symp...

YORUMLAR • 442

  • Jami Donges
    Jami Donges 3 yıl önce +213

    It was in 1978 and my parents primary care told my father that my mother was just drunk? With 5 of us kids at home to care for! It wasn't until she seen the optometrist that she first even heard of MS. Shortly after that was the neurologist and then after that she was in a wheel chair! I was 12 and terrified I can't imagine how she felt! All these years and she's never complained! She's the strongest woman I've ever known ! Love you mom!

  • Anna Cruz
    Anna Cruz 2 yıl önce +53

    My mother had MS my whole life. By the time she was finially diagnosed she was 27 and already in a wheelchair. Her scarring was worse that the model her nuerologist had in his office. She lost control of her hands, legs, eyes, and even forgot my name a few times. She passed at 42 and I miss her everyday. I hate MS. She did not deserve to suffer as she did. No one does.

  • Lucylovewalk
    Lucylovewalk Yıl önce +210

    When people say to me,

  • Sandra Gordon
    Sandra Gordon 2 yıl önce +38

    This is interesting... My paternal grandmother had MS and I have shown symptoms since I was young. I asked my doctor for the test and was flatly refused this - and have been by so many doctors here in the UK now. One doctor told me to lay on her examination table, lifted my legs by the ankles and said "You probably don't have it"! I'm pretty sure this is no way to tell if a patient has MS or not.

  • Dora Camarena
    Dora Camarena 6 yıl önce +107

    I've had MS for 14yrs. It's rough, You just have to keep going. It's truly one of those things MS can take you down, you just have to remember you have MS but MS doesn't have you!! Make it your friend because your with it everyday 24/7. I know this sounds crazy but it helps me get through my day. Remember YOUR IN CHARGE!! Not MS!! Positive Thinking. I thank God everyday,Knowing it could be worse.

  • Cynthia Schaub
    Cynthia Schaub 8 yıl önce +9

    This is a really good interview for family members. Invisible symptoms are so frustrating when you decide to tell family members what is happening and they say you look fine. Thank you!

  • Margaret Forrest
    Margaret Forrest 3 yıl önce +22

    Thank you. I am still trying to wrap my mind around this diagnoses. I thought at my age it was impossible , guess I was wrong, My care team is wonderful and I feel blessed to have so many people on my side.

  • Mary Jane Hurley Brant
    Mary Jane Hurley Brant 9 yıl önce +8

    Kate Mellikin and Rosalind Kalb, Ph.D. have done a marvelous presentation with this teaching video. Part II is also excellent. They have a wonderful style together, too. I have passed it on to many families and everyone is appreciative.

  • Jay
    Jay 9 yıl önce +17

    I was diagnosed earlier this year after about 2 years of fairly serious fatigue and a worsening limp. A case of 'bad news is you have MS. Good news...You haven't been going nuts !' Really helpful vid. Thank you

  • YaBoiLisandro
    YaBoiLisandro 3 yıl önce +8

    I've had the "you look good" thing happen too often. It's been hard for me because I only new my pathology as chronic fatigue and only now am I hearing MS being thrown around as a possible diagnosis. Invisible symptoms are so hard to describe.

  • mewho1
    mewho1 5 yıl önce +89

    What I need to know is how to get so-called "health care" professionals to listen and respond at all when patients report their MS symptoms. Instead of being evaluated properly, I am mocked and psychologically abused by so-called neurologists and denied treatment every time I speak out. My suffering grows more severe with every passing day and whenever I reach out to the only neurologist I'm allowed to see, he deliberately blocks access to any medical intervention, delays or refuses MRI scans, and always claims his actions are a "misunderstanding." He always blames his underlings, like receptionists, for failing to be a physician. How can I possibly continue to live in this situation?????????

  • Robin English
    Robin English 6 yıl önce +28

    I was diagnnosed in 1990 and have been blessed in many ways by not having to use a wheelchair or other helps that many use. I recently sold my home and moved because I realized it was time for a one floor home after falling several times. The whole process of selling, packing and moving and now finding places for my things has been such a challenge with my cognitive abilities declining quickly. These videos have shown me to not be so hard on myself and that hope for learning a new way may be my answer. I am switching treatments because I dont think my copaxone is as effective; my neorologist agrees and it too is scary. Thank you all for your work in this area. sincerely~Robin

  • Conor Smith
    Conor Smith 3 yıl önce +161

    I am 11 and doing a 30 mile bike ride to raise money for MS and after watching this i see how bad MS is

  • Matthew
    Matthew 5 yıl önce +6

    Another fantastically informative video, having been diagnosed with MS in December 2015, these video's have been an amazing source of information and listening to other peoples stories has really helped me cope.

  • Gary Kula
    Gary Kula 10 yıl önce +2

    My son (age 14) has just been diagnosed with MS and things that I've been seeing over a period of time are now making sense as to why. Thanks for sharing this video.

  • angelusa73
    angelusa73 8 yıl önce +4

    I agree with that! I might look "so good" and I might not look terribly sick, but I am and the invisible symptoms of MS are invisible. Many are and I experience many of them so I know they exsist and they are not easy to live with. I have had a little bit of everything in only 6 years living with this disease and I can say that the emotional and invisible problems are the haardest for me more than not moving right. Everyone is very different and we all ecxperience different things,
    Angela:)

  • tera morera
    tera morera 8 yıl önce +4

    So well done! Thank you so much for your contribution. My personal case is unique - strictly upper body - and symptoms (of spasticity, eye rolling and oromandibular dystonia) are rapidly worsening. It is only now - with daily spasticity - that I am desperately searching for answers. I will keep educating myself on line and continue to pray for direction! One coping skill I use is biofeedback breathing. Worth doing! Search cardiac coherance.

  • bethany2nirvana
    bethany2nirvana 8 yıl önce +8

    Diane I know what you mean about the hard heart pounding. I can hear it in my ears too at various times of the day. I am not diagnosed but I have all the symptoms of MS and have been intoxicated feeling for 4 years now. Wish there was help for me. hope you are doing well.

  • jennyenny Enneper
    jennyenny Enneper 2 yıl önce +2

    I was diagnosed with lupus 8 years ago but over the years I've had several neurologic episodes that are getting progressively worse. Non stop neuropathy and numbness, loss of balance, eye issues and "starbursts" with night driving, nystagmus and headaches, but I also had meningitis. . But I'm being sent for an mri finally. So we'll see. It's been a long road. I'm so tired.

  • Fruit-of-Life
    Fruit-of-Life 8 yıl önce +21

    I was diagnosed with relapsing remitting MS in 2004 after 18 months of over 25 symptoms. Medications were horrible. By 2008 I had to use a wheelchair when the weather was hot or humid. Today I have NO SYMPTOMS and feel better than I have in over 20 years! Watch our videos to find out how I've healed my body. We are here to help!