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if the people I'm supposed to be able to rely on for support, don't understand what I'm going through, how can I expect them to help me through learning how to cope with this diagnosis? they don't understand how big of a deal stress or fatigue with MS is so vastly different from what they deal with. I was diagnosed with tumefactive MS it came on so fast. within a few hours of feeling what was normal at that point, within a few hours i was slurring so badly, no one could understand a single word… read more
No one gets it until they get it, You need to be well educated on the disease in order to convey the information about the disease, Wish I had the video of the charge travelling down an axon normally and demyelinated. Chris has a good figure of the seen and unseen symptoms of MS.. That is important to convey what they can't see.
I met my wife who has MS 22 years ago, she did everything in her power to scare me away by showing me what she had to deal with, but i'm still here, you have to keep in mind your MS will be way different than anyone else deals with, My step Daughter was diagnosed with MS at age 22 like my wife, its very rare for MS to pass to children, but she got it, if your diagnosis is recent your way better off than most, there are new drugs to keep MS at bay and keep you healthy, my step daughter is on the new drugs and her MS is staying stable, you have to find a good Doctor and stay on the meds and keep up on it, your correct that MS hides its self and many dont get it because they dont see and feel what you do, all you can do is tell them what you deal with and ask your close family to do some research, or find some written info to read so maybe they will get a clue, in your shoes i'd do my best to go about my life, date, meet people if your able and take care of your self, my wife met me, and my step daughter met a young man who accepts her condition and they love each other, my step Daughter has a PHD in medical research and she works for a drug company, you have to not let MS rob you of a life, hang in there, if your stable and your DR is keeping you going you have already gotten past the worst of it, let us know how your doing.
My husband was with me when I was diagnosed so he was able to ask his own questions and he has gone with me to all appointments. I told our kids but I didn't know much about it at the time so I couldn't explain much. Some of the kids )we have 7 between us) looked it up on their own, the rest. Since none of them live with us I don't explain a lot unless they ask. The above post works good and even helps me understand a little better.
Explaining invisible symptoms can be incredibly challenging. One helpful approach is to use relatable comparisons - for example, some people describe MS fatigue as "like having the worst flu, multiplied by 10." When sharing about MS with family, it's perfectly okay to take your time and share information gradually as you Show Full Answer
Dale: Check this out: https://www.youtube.com/watch?v=iC9U0Obzhh4&...
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