Invisible Symptoms in Multiple Sclerosis (Part 1) | National MS Society

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[jamidonges]

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!

[Lucylovewalk]

When people say to me,
“ You look fine, You don’t appear to be disabled .”
I tell them, , , “ Well, you didn’t appear to be judgmental at first either . “ 😂

[doracamarena]

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.

[conorsmith]

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

[KungFuMonkey]

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

[Tapiaaaaa]

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.

[cynthiaschaub]

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!

[d]

I'm in my early 60s and have had MS for about 40 years. As an athlete it has really impacted my whole life, to such an extent that I even needed a wheelchair about 20 years ago. However, I have never found anything that even comes remotely close to exercise for helping with the symptoms. Sure, it's very easy to overdo things and suffer terribly afterwards - I still do that all the time. But playing the long game, it's definitely a case of use it or lose it.

[PMSAvenger]

Thanks for posting. I was diagnosed with MS 2 years ago. The only symptoms I experience daily is the odd bodily sensations and some clumsiness. Two years ago it was much worse. I try to focus on the positive aspects - like I can still walk. I often don't disclose that I have MS, but yes, I have had people look at me like I was making it up when I have told them ... it's true, there are "invisible symptoms". I have learned that emotional stress greatly impacts the symptoms. Best to avoid.

[maryjanebrant]

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.

[margaretforrest]

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.

[WOLFEAGLE]

I can have a full nights sleep and wake up then two hours later feel like I drove from Phoenix to Dallas non stop.. Dx MS 2000 

[mgtow]

Telling someone with MS they look good is like telling someone who is hard of hearing, , You don't look deaf".

[Rprayhardu]

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

[LainyOLainy]

i have been living with the brain fog, pain, can't keep up with my and i worry people may think I am going on, but MS really does make life tough and we do try to work it so it doesnt affect too many people. But please give us a you know someone who is a sufferer... be nice

[lottieew]

Simple partial epilepsy :)
tried for about half a year to be seen by a neurologist, because my GP thought I was depressed. Then, I had one where mum found I had held my breath, checked it on NHS symptom checker, which came back as a baby-stroke, off we go to A&E, and when a nurse did a pupil reaction I had a seizure right in front of her and my pupils didn't dilate. She got round my GP, to the Trust's neuro hospital, and the neurologist had to get me an MRI to diagnose me.
I tell everyone how it became diagnosed, because I don't want others to be left on their own.

[MaryLynneChristman]

If I let myself get extremely fatigued then my invisible symptoms really kick in mood swings, brain fog, numbness and tingling, loss of balance then I get even more tired trying to keep them invisible to others. Meditation seems to help.

[mongoosevacations]

I am glad I found this.  I do have a symptom that is not MS related that I am fighting so hard to have corrected. Don't be afraid to expect regular considerations of your symptoms before hearing the "easy way out"  without proper evaluation. And don't become dejected if your doctor feels you are not a doctor in considering it.  If you have accepted the fact that you have MS, go with your gut and even a second opinion.

[monikafreidel]

I have lived with MS since I was 16 years old, it took another 24 years to get the diagnosis. But I knew. This is a brutal disease.

[חניבןעזרא-סס]

sometimes I can sleep 17 hours a day, not les then 9 hours in a good day, because that fatigue.