Layout:
Home > I have Multiple Sclerosis (MS)

I have Multiple Sclerosis (MS)

January 18th, 2008 at 06:03 pm

Back in the beginning of this past December, I was diagnosed with MS. It wasn’t a total shock; I used to work for the National MS Society so I knew a lot about the disease, and a part of me had a feeling I had MS. I had a lot of the classic signs, but my Dr. kept telling me it was something else. When I was in Vegas over Thanksgiving, I lost almost all my vision in my right eye. As soon as I got home I went to my eye Dr., and I was diagnosed with optic neuritis. My eye doctor sent me for CT scans and an MRI, and then to a neurologist. The MRI showed areas of MS activity, and my neurologist diagnosed it.

I have been doing OK with the disease (I start preventative medications this upcoming week and my vision is back to 100%), and since I already know a lot about it, I am not really panicking or freaking out. I’ve told my family, some extended family, and my friends. One woman at work knows; maybe more, for all I know.

Anyways, I wanted to share this with all of you even though it is not financial, because, in a way, you all are like an extended family to me. This actually will affect finances, with the meds being so expensive (between $10,000 and $15,000 a year!), more doctor visits and if, Goddess forbid, something serious happens, trips to the hospital, possible physical therapy, or even equipment to help with disability issues. But for right now, I just wanted to share with all of you, not only because I know you will give me massive amounts of moral support, but because when I do start to mention the financial aspects of it, I wanted you all to know what I was talking about, without having to explain it several times.

You all have been wonderful in terms of listening to (or reading) my rambling, sometimes mindless posts, cheering me up when I feel defeated, and encouraging me when I am doing well with finances. I just felt like this was something I wanted to share with all of you, not only as my financial buddies, but also as just my buddies.

Anywho, enough of this for now. Feel free to ask any question you may have, or feel free not to say anything. But whatever your reaction is, thank you for the support and the (hopefully) continuing support.

36 Responses to “I have Multiple Sclerosis (MS)”

  1. Ima saver Says:
    1200679735

    So sorry to hear about your illness, but I am glad that you know so much about it. Just hang in there and you know we are all here for support!

  2. luxliving Says:
    1200679926

    I am deeply touched by your beautiful expression of comraderie! ...and horribly sad to hear of your diagnosis.

    Take good care of you!!

  3. PauletteGoddard Says:
    1200679955

    Thanks for sharing this with us. You demonstrate courage and grace. My question: I have glaucoma, and am losing some vision in my right eye. What medications did you take that improved your vision? Are you supplementing with any vitamins or making pronounced diet changes?

  4. nance Says:
    1200680174

    I'm sorry to hear about your recent diagnosis. You have a great attitude, which will see you through. My next door neighbor was diagnosed with MS years ago. It also started with vision problems. He has been in "remission" for years, and is doing very well. Hope yours is managed as well.

  5. denisentexas Says:
    1200680252

    I'm sorry to hear about your diagnosis but am happy you have a good support system, especially here! I'll keep you in my thoughts and prayers.

  6. threebeansalad Says:
    1200680423

    You are so brave!

  7. Koppur Says:
    1200680588

    Paulette: optic neuritis is an inflammation in the optic nerve that attaches the eyeball to the brain, so it isn't actually an eye issue. It just affects the vision. I was on a 10 day dose of oral steroid (prednisone) and it cleared up within 2 weeks.

    Right now I am waiting to start preventative treatment and then I will see which vitamins my dr. recommends and which won't interfere with the meds I am on.


    Nance, that is wonderful that your neighbor has been attack free for so long and is doing so well. Hopefully there will a cure one day so everyone can do that well. Smile
    Thanks to everyone for the kind words!!

  8. Koppur Says:
    1200680732

    LOL Three bean; I'm not that brave...I'm just lucky it is mild right now and that I know so much about it already. Truthfully, I keep having panic freak outs over it. I keep thinking since it is a disease that affects your central nervous system and brain, I have a brain disease and my brain is being eaton away...so not that case! LOL You should have seen me an hour ago today! Smile

  9. mom-from-missouri Says:
    1200683281

    Welcome to the club. I found out I had it several years ago, but we think looking back that it has affected me since high school off and on. Mine to is mild.
    My biggest complainted normally is having to go to the bathroom more often-between having MS and having had twins, I visit that room quite often!!

  10. davera Says:
    1200683493

    A cure must be found for this disease! I have several cousins who have it, and I do what I can to contribute to the MS Society.

    Koppur, your post reflects courage and a positive attitude. With your knowledge and your strong character, I'm sure you will always be on the upside of this, come what may. I do wish you the very best prognosis possible.

  11. mjrube94 Says:
    1200683742

    I"m so sorry to hear that. My SIL (37) and our friend's wife (44) have both been diagnosed within the last year, both after eyesight loss. It's scary. I'll be thinking of you, and will "listen" anytime you post.

  12. Broken Arrow Says:
    1200684101

    Wow. Sometimes, I just really don't know what to say. A cousin of mine has it, and she said that it's life-long. I'm saddened by this news. Please take care.

  13. ceejay74 Says:
    1200696077

    Koppur, that's sad news. I've heard that people who know others are praying for them do better with illness. Maybe our little community will have some tiny part in helping you stay healthy!

  14. Nic Says:
    1200696568

    Thank you for caring enough about us to share your story. Sending lots of good,healthy, vibes your way.

  15. Amber Says:
    1200698671

    Things happen for a reason, I don't know your religious stance but I would say that God placed you in that volunteer position to learn as much as possible prior to you being diagnosed, which I would say is a blessing; you got to learn about the disease and how to live with it. I am however very sorry to hear that but am happy that you are taking it well, I think if it had been the other way around your condition may have been worsen.Hang in there and I will definately keep you in my prayers
    You are definately a blessing Smile

  16. Dido Says:
    1200698890

    Koppur, I'm hoping the best outcome for you with this disease. I've had lots of friends who've had it, and their stories have varied greatly. I'm hoping that you have a *relatively* easy ride, though I know it won't be easy, and that a cure comes for you and all other sufferers after not much longer. With thoughts & prayers for you.

  17. zenith Says:
    1200702417

    Koppur, I am so glad you posted here for support. I know the folks here will do their best to keep you in their prayers and keep your spirits up. How would anyone know if we don't share?
    I know it must be frightening to be diagnosed with something like that. I respect your courage.
    Thanks for sharing and good luck.
    You do have health insurance don't you?
    Sounds like a lot for medication for a year. Is that with your insurance?

  18. scfr Says:
    1200706062

    Koppur - Thanks for sharing with us.

  19. Toyguy1963 Says:
    1200721137

    Sorry to hear about the illness and I wish you the best kopper. It sounds like you are dealing with it great and doing all the right things to get yourself better.
    Thanks for sharing something so personal with us too. I'm sure everyone's moral support and hopes and prayers are with you.

  20. Thrifty Ray Says:
    1200726347

    Koppur- my best wishes to you for mild symptoms and long remissions. MS is a frustrating disease to say the least. Remember that stress can bring on exaserbations...and if you control the stress, you help control the disease.

    Good luck to you!

  21. aevans1206 Says:
    1200740592

    You sound like an amazingly strong person. God bless you!

  22. clubneary Says:
    1200754726

    Hoping the best for you. One of my best friends has MS and has since moved from New York to Florida so I don't get to see her very often. We do communicate through email on a daily basis and it kills me to hear what she has to deal with. Unfortunately hers is not a mild case. I wish you the best and pray that you continue on a mild path. Lean on us, your family and friends whenever you need to. That is what we are here for!

  23. koppur Says:
    1200758075

    Thank you so much everyone. It brought tears to my eyes reading all your kind words. Hugs all around! Smile

  24. Carolina Bound Says:
    1200776037

    Koppur, I just saw this. Just wanted you to know that I am pulling for you also. The daughter of one of my friends was diagnosed a couple of years ago and she is doing well. I hope that you will, too.

  25. katwoman Says:
    1200783102

    I, too, just saw this post and want to commend you for your wonderful attitude given this diagnosis. This is going to make all the difference in managing MS.

    Take good care of yourself and I'll be sending happy thoughts your way!

  26. fern Says:
    1200788482

    Oh, gosh, I am so sorry, K., i just saw this post.

    I don't know if you realize, i've only mentioned it a few times in my blog, but i have MS too, the mild kind, forunately.

    If there is anything i can do to help or if you'd just like to talk to someone who's been there (for over 22 years now), just say the word.

    Everyone's situation is different when it comes to MS, but you CAN manage this and make it just a part of your life, not its central focus.

    I was just a little younger than you when i had my 1st symptoms, but in those days, MRIs didn't exist, and i wasn't diagnosed until 5 years later when i had another relapse.

  27. terri77 Says:
    1200797696

    Thanks for sharing this with us. Knowing what you're dealing with is key to managing it. I'll keep you in my prayers.

  28. debtfreeme Says:
    1200810917

    my thoughts are with you and your family and i hope the remissions are often and long.

  29. JanH Says:
    1200945577

    Just now catching up from this weekend....good thoughts go out to you! We're here to support you whenever you need it!

  30. tripods68 Says:
    1201040495

    I'm fairly new here. But I just wanted to say that your a strong person, honest, calm and collected. You'll fight this disease head-on and you will win. Stay strong!

    God bless.

  31. boomeyers Says:
    1201201814

    Sorry to hear of your diagnosis! We have been living with this with my father for the last 25 years. He has the progressive kind, so a little different! But never give up hope!! Smile We have to find a cure someday!

  32. miz pat Says:
    1201628852

    God Bless you dear. You are brave and wise and I wish you the best in everything.

  33. tynana Says:
    1201747777

    Koppur, thank you for sharing with us. My wish for you is that you can remain positive and hopeful and that this disease will not take away your happiness.

    Lola

  34. miclason Says:
    1201756006

    ((hugs)) will make sure to include a special mention in my prayers (though I generally thank God for all the wonderful people in my life, both in "real life" and online!)

  35. pearlieq Says:
    1201827816

    Sending some good thoughts your way...

  36. Czes Kulvis Says:
    1210296789

    Hi Koppur,

    Your thoughts are quite positive, but not complete.

    Wouldn't you be interested if I told you, how to stop MS without soooo expensive medications?

    I am not joking, I am not trying to sell you snake oil.

    I am on a permanent MS remission from 1997 - no drugs, no doctors.

    More- on pages of my web site MS natural cures.

    All best -

    Dr. Czes Kulvis

    PS nobody has a truth monopoly

Leave a Reply

(Note: If you were logged in, we could automatically fill in these fields for you.)
*
Will not be published.
   

* Please spell out the number 4.  [ Why? ]

vB Code: You can use these tags: [b] [i] [u] [url] [email]