Page 1 of 2 12 LastLast
Results 1 to 10 of 12

Thread: Just diagnosed

  1. #1

    Default Just diagnosed

    I was diagnosed with MS on 03-19-2012. While I am glad that I finally know why I am having all of these symptoms.....I am still frightened of the unknown. For years I have had problems with balance and walking and no one could figure out why. I am glad that I now know why, it is difficult to think that it will never get better. I am unable to walk without a cane, being able to grab on to walls or furniture, or the assistance of others. I have some books/literature to read but I would like to be able to hear from others that are going through the same thing. I am currently taking Avonex but if I understand it right, things will not get better but the Avonex can prevent rhings from getting worse.....is that right? I have so many questions and concerns it would be a great help to hear from others that are dealing with MS as well.

    Dawn

  2. #2
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,733
    Blog Entries
    11

    Default

    Hi Dawn, and

    I'm really sorry that you have an MS diagnosis. Definitely not good news.

    I hope you've been reading up on it and keeping in mind that for everything you read, the chances are pretty good that soon you'll read something else that says the opposite.

    You're right about Avonex. The idea is to slow the disease down, but not everyone responds favorably to Avonex.

    You wrote:
    it is difficult to think that it will never get better.
    In a way that's true, but in a way it isn't. Many people have long periods of remission when they don't have symptoms. If you're not one of those, you will still find that you have good times and bad times, and that there are some ways of preventing symptoms from coming on--or from being too bad.

    It's trial and error. You have to find out what works well for you. Some people do better if they avoid heat. Some find that slowing their lives down helps considerably.

    Also, there are quite a few drugs offering relief of symptoms.

    You'll find people here who are on Avonex or have been on it, as well as people who've tried the other MS drugs. We're here to help.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  3. #3
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Red Sox Nation :D
    Posts
    2,286

    Default

    Hi Dawn. Welcome aboard! Sorry about the diagnosis but it is better to know than think you are crazy, no?

    I would have agreed with the statement that "you won't get any better than you are now" for most of my years w MS. But it has changed- I am better now than I was 5 years ago. Walking more often and further. W/o a cane. Not using my scooter or the store scooters- it doesn't even enter my mind.

    Why would that be? I think it's a combination of being off of the interferons (15 years I think)- they cause depression in some people- and an increase in moving. Just keep moving. Stay interested in the world and people in your world. There is some evidence that Copaxone- the drug I've been on now does make some things better but I'll have to look up the links for that.

    I also eat well- veggies, dairy, salmon, occasional tuna (and ham when I visit my mom:)).

    Be well,
    ANN
    There comes a time when silence is betrayal.- MLK

  4. #4

    Default

    Than you so much to those of you that have responded. I am still confused on the different types of MS. Apparently I have had it for several years according to my neurologist. I started having problems walking about 4 years ago and it steadily became worse. It is to the point now that I am unable to walk without assistance, either a cane, something to reach out and steady myself, or holding on to my husband. It doesn't seem to get any better. After walking in the grocery store, while using the cart to steady myself, after a few minutes my legs feel so heavy and my toes begin to drag on the floor to the point I start to trip and have to slow way down.....is this normal? I don't seem to have any remission at all, it just stays the same. I hate the fact that I am unable to walk and get around as I did before.....I worry that I am a burden on my husband and children. My husband has been awesome and I know is right there beside me.

    I have an appt. with my neuroligist on May 3rd to find out if Amprya would be something that would help. Does anyone know much about this med?

    Thank you for listening,

    Dawn

  5. #5
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    6,733
    Blog Entries
    11

    Default

    Hi Dawn,

    I haven't tried Ampyra but it's been discussed on this board--for instance, here.

    You asked about the types of MS. The commonest one is relapsing-remitting MS (RRMS). You might have an attack but then the symptoms would pretty much go away, and later--maybe many years later--you might have another attack. And so it would go. Opinions differ about whether you're left with some "deficit" after a relapse or flare.

    This can turn into secondary progressive MS (SPMS). You no longer have remissions with SPMS. The symptoms stay with you though you have better times and worse times.

    There is primary progressive MS (PPMS) too. It doesn't have a relapsing-remitting phase. You get symptoms that don't go away.

    There's also progressive relapsing MS (PRMS), in which you have a progressive form but you still have relapses and remissions. This is less common than the other 3 types.

    Way down on the list because it's so rare is the Marburg variant of MS, also known as "malignant MS." It's rapidly progressive but very rare.

    These categories are a bit fuzzy. It's not always clear what category a person with MS belongs in because it's such a strange and changeable disorder.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  6. #6
    Distinguished Community Member SalpalSally's Avatar
    Join Date
    Oct 2006
    Location
    SWOhio
    Posts
    3,569

    Default

    Welcome to Braintalk Dawn, nice to meet you.

    So sorry for your DX of MS, but like I said when DXed, "it could be worse".

    I hope you find all the answers you need to make your journey less stressful. We are here whenever you want to talk or just whine about things. We understand.
    Love, Sally


    "The best way out is always through". Robert Frost







  7. #7
    Distinguished Community Member Abby2006's Avatar
    Join Date
    Oct 2006
    Posts
    311

    Default

    Hi Dawn Welcome to the board
    Sorry you have to be here but you've found a good place to find answers.

    I do not do any of the MS drugs

    Abby
    Stand for something or you will fall for anything

  8. #8
    Distinguished Community Member Pegakafarmgirl's Avatar
    Join Date
    Oct 2006
    Location
    Iowa
    Posts
    679

    Default

    Welcome to our world of MS, sorry also you have to be here,, but we are basically harmless, and a lot of very smart people here,,

    Yes I was on Ampyra, try it,, it could be the key to you feeling better,

    hang in there,,
    " Don't outsmart your common sense"

    Peg

  9. #9
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,351

    Default

    Welcome to the board. Peg is right there are lots of smart people here and I am not one of them. So I will leave the technical questions to the folks that know what they are talking about. Getting a Dx of any disease is never easy and especially one that can have so many different effects on your body. We go along telling our body what to do and now it no longer wants to cooperate. I have learned albeit the hard way that you can not wait for the other shoe to fall and you can not spend time wondering what the next problem will pop up. Easy advice to give but boy it sure is hard to follow. It sound cliche but you really do have to take one day at a time. And you have to learn to say no. There are/ will be times that you don't feel all that great and you don't have the energy to do something.

    And of course there are time where the train just jumps the tracks. It happens and you will learn to deal with it. You will get the dumb looks and as MS is a neurological disease you will get the dreaded " I didn't know you were sick YOU LOOK SO GOOD!!!" Or the "My aunt/cousin/friend has MS and THEY never have any problems" and of course my all time favorite " I have MS and I never let it get me down I just wont let it interfere with my life that's why I NEVER use a cane I wont give in to MS!"

    Well goody goody for you lol.

    Sally is correct please come here to vent, whine talk about the weather or ANYTHING especially when you wanna talk about something other than MS. There is not one person here that has not been in your position. You would be surprised at the amount of post that just simply said " today at Wal-Mart some idiot parked in the handicap space with out a sticker and ...... well you get the idea. The drugs and treatments change often and even the way old treatments are used change. So ask those questions even the ones that seem trivial because right now there isn't anything that is the slightest bit trivial about the effects that MS has on your body.

    I have had MS for quite awhile and just the other a member sent me a link about modifying a therapy (IVSM to be exact) and my dr thought that it sounded good. Now for one piece of advice don't be afraid to talk to your dr about anti-depressants or if you have MS caused pain. These are (IMO) 2 of the most under served effects of having MS.

    Again welcome to the board and yeah I do use a cane and I have used a walker, rollator and a wheelchair. It just depends on how my MS is acting at any different moment. I am glad to see that you have a good support system that helps a lot.

  10. #10
    Community Member
    Join Date
    Feb 2008
    Location
    East-Central Florida
    Posts
    27

    Default

    Hi Dawn and welcome to the forum. We call MS the designerdisease because it treats us all differently.

    I have had MS for 20 years (minus a few months) and still ambulatory. Have RRMS have had exacerbations but recover.

    I take Copaxone for 9 yrs now. There are also alternative Tx's. I find avoiding heat, stress and low-fat diet helps. Moderate exercise, as tolerated, even stretching. Avoid infections and fevers. Glad you found us. The sticky's are very helpful.
    Last edited by LaCeli; 04-30-2012 at 07:02 PM. Reason: Edited to break up text.
    "No man is an island entire of itself, every man is a piece of the continent, a part of the main"....
    John Donne

Page 1 of 2 12 LastLast

Similar Threads

  1. Diagnosed Fibro for years
    By britsbff in forum Fibromyalgia
    Replies: 3
    Last Post: 12-31-2011, 05:29 PM
  2. MS can be diagnosed early with ‘electronic nose’
    By Herodotus in forum Multiple Sclerosis
    Replies: 3
    Last Post: 10-17-2011, 07:34 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.