Again Vicki, you have taken the words right out of my mouth! But only you could have put them in an article that is easy to understand for all the other folks out there. We seem to be on the same "progressive" path although you have known about yours a lot sooner than I learned about mine.
Lisa's #11 is a good one too!
Stay cool!
Jan
Great post Vicki. It really puts everything in perspective, doesn't it. When I was diagnosed they couldn't tell me much about MS- they didn't know too much. Don't get over heated or stressed out was all they said. Being that it was the end of June and I just found out that I have an incurable, unpredictable potentially progressive disease- both were a tall order. Back then, the optimistic me used to say "Well, at least I won't be in pain and I'll have no problems in the thinking dept." I've always been a cup half full kinda girl. ;) But here we are today; we now know that MS can cause pain (first hand experience there) and it can compromise cognitive processes (not sure if I'm experiencing that, or just being over 40!). But we also know a lot more about the disease (though parts continue to be a mystery) and we now have numerous disease modifying treatments. That one is a biggie. So, a lot of the info about MS that confused me when I was diagnosed- no one knew the answers to. And so much of it we all have to learn on the fly- we all have different experiences with the disease.
That said, many of the points you brought up here are ones that were on my TTL list (things to learn) and took many years of experience to understand the truths; atleast as they relate to my MS.
I think my favorite change since 1988 is that we are all connected here in cyberspace, where we can learn and comfort and read posts on websites that get us thinking. ;)
Thanks Vicki!
Hello Miss Vicki
This is a really good list. Before I was diagnosed I knew next to nothing about MS. I knew some celebrities had it like Richard Pryor or Annette Funicello. But I didn't know much else.
I have a question about the vision problems. Have any of you experienced seeing a zig-zaggy arc which grows as a half circle in your line of vision and looks like reflecting mirrors? I asked my neurologist about this and she told me it could be a painless migraine. But is this also part of MS?
Vicki...how long did it take for your MS to progress to the newer diagnosis?
One thing I didn't know about MS is that there can be a great delay in the first symptom to having an official diagnosis. My first symptom was optic neuritis...had an MRI back then...said I was fine. Ten years later....and with no symptoms in between...I was having lots of symptoms and the MRI showed lesions. I often wonder if they just didn't know I had MS back then or...does it take many years to manifest?
The other thing I didn't know is how varied the symptoms would be. Cognition, balance, speech, sensory sensations, vision, movement...anything goes. I can have some numbness and tingles in my fingertips one day and the next I can be on the floor with muscle spasms. One thing you can say about MS...never a dull moment. :>)
Thanks for sharing this. It is very helpful. Hope you are having a great week. Good to see you.
MS does not discriminate so all kinds of celebrities get it, too. I am really sorry about Annette, the sweetheart of my early adolescence. She use to act with Frankie Avalon who held her up, but it was hard to tell.
Yes, sometimes I get zigzag vision, but not necessarily the half circles. My zigzags may duplicate themselves, then dance around. This might be fun if I didn’t rely on my vision to see. It does make it difficult to read and write and stuff.
By the time I was diagnosed, I had already been having symptoms for years. I thought it was seven years, but I had optical neuritis ten years before. I was already slipping in to Secondary Progressive. That was a particularly stressful time. My boys were teenagers, and they were acting like it. Their father was also acting like an ex- even though we had been divorced 14 years and he had been married ten years or so. Stressful, stressful. Anyway, I have read that Secondary takes different time for different people. It is not unusual for it to take 40 years. Some people never get there at all.
How long it takes between symptom and diagnosis? Oh my gosh, how can I say? There are so many people here at Health Central who talk about being in limbo. That is the same between Primary and Secondary.
MS is varied, with lots of symptoms that seem to have nothing in common except they seem to belong to us. It does get confusing. Just when you think you understand the symptom, another comes along. Two symptoms that are active at the same time may be located in the same area, or they can be far apart on different parts of the body, doing totally different things.
You are welcome. Health Central is a good place for sharing. I am glad it is helpful. Yes, I am having a great week. Thanks for asking. And I hope you are doing well, too.
Vicki,
Once again you wrote beautifully on what you learned about MS, in an easy-to-understand format. I agree with all 1-10 of your list, and I love what Lisa added for #11.
For me, #12 is that after 25+years of having MS, I was pointed in the direction of working toward a certificate in patient advocacy, which I'd like to use for people with MS. Number '13 is meeting wonderful, warm, caring and compassionate people with MS, many who I consider my close friends, even though some of them I only know "virtually"! Number 14, (which is really my #1) is teaching my child about MS and exposing him to disability and instilling in him a better understanding and tolerance of people with differences.
Another great and thoughtful post. Thank you Vicki. I am now adding my own top 10 list
I now know what MS is and did not know before
I have learned that I have a high tolerance for pain.
I have learned how in accessible the world is, especially Europe and older communities.
I have learned that there are a lot of kind people in this world who are willing to assist whenever assistance is needed.
I have learned more about gratitude than I ever could have learned in a life without incident.
I have learned that there are no right answers, just what works best for you.
I have learned how effective marijuana can be!
I have learned how to make friends on the Internet…… Just like you
I have learned that everything in life happens for a reason and that we get to decide what that reason is.
I have learned just how incredible my wife is and how much of a difference it makes to have someone to take this journey with you.
I also know that I have a lot more to learn and that you will be there to help me do just that.
Michael
Dear Michael,
This is the most beautiful list i have ever seen,and probably the most accurate. You could have listed ten negative aspects of life with MS, or things you have lost due to MS, but I appreciate that you wrote what you have learned and they are all positive. You must be a joy to be around and your wife must gain a lot by being there to assist you when you need help.
Thanks again Michael. I wish you and your wife a long life of love, happiness, and the best health you can have.
Denise
This is a good list of things you learned, and there are several more I could add. I had a spine problem for several years before I manifested any symptoms that looked like MS and in 1980 after my surgeon found that nerves coming from my spine had no myelin he said I probably had MS. No doctor after that would consider it because I had chronic pain and numbness in my legs and feet which were thought to be from my spine problem. It wasn't until 1996 that a doctor did a brain MRI and I was told I did have MS, and I now have a whole list of symptoms. Since then doctors, including the doctor who gave me that diagnosis, have gone back and forth saying I definitely have lesions and demylinating, but because of all the spinal surgeries and the damage done in the first one, maybe it's not MS, although I am not given any other name for what it could be. So I would add, after 4 spinal surgeons, including a double fusion, and a series of several neurologists, that MS can be denied to avoid conflict. Because of my experience, I agree with all the positive things you list and that others identify but I have to question whether,in my case, MS has been a blessing.
Wow Denise, it sounds as if you really had a hard time.
I have learned more things than I put in the article, but I thought ten was enough.You, however, could probably make a list much longer than I could. I am sorry to hear that.
I understand how you question if MS is a blessing, but at least you know what is causing the problem. That doesn't sound like much of a good thing.
Hopefully your spine is better now. Is your MS stable now? good luck.
Thanks Vicki. No nothing is calming down, in fact my MS and chronic pain are both progressing rather quickly right now. My MS symptoms are progressing, especially my vision and mobility. And I am in terrible pain. But there is no use going into it all again, I appreciate your everyone's support and kindness. Lisa said it well before, this is a great place to find friends and people who can understand what you are experiencing. As you do, Vicki. Thanks again.
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Hi Lisa, Thanks for the kind words. Your number 11 is pretty good.