12/13/11 The day that changed my life

[Jacksmom516]

Well it is official - I have been dx with MS. Amaxing how no matter how mentally prepared you are when you hear those words it hits you like a ton of bricks -  My neuro is very positive.  We are discussing DMD's she wants to start me on them right away.  Also adding Ampyra as walking is my main sx.  Don't really have any other ones right now.

Really haven't told anyone yet - want to wrap my head around it first and get thru holidays as just me not me with MS
Also don't really think I can handle the questions and the poor you looks just yet -  it still hasn't really sunk in.  Good thing about the holidays so busy don't have time to dwell.  Anyway that is the update from the Dr appt.  Next step is which drug I am going to start taking,

[Jacksmom516]

Have decided to start Avonex - hopefully side effects will not be too bad.  Waiting for insurance to approve it and then get started probably after New years - also going to be taking Ampyra and on Baclofen.  Walking is my main issue - actually my only sx - so far - I have foot drop and wear an AFO - can I say I hate the thing!  Anyway - also going to start PT so the Dr is thinking I will be more ambulatory -  we can hope -

Thanks for everyone's input

As far as CCSVI - I have done some research and right now I will have a tough enough time paying for my meds let alone something like that!

[sadie405]

I just read a really helpful book--

"The Mulitple Sclerosis Manifesto" by Julie Stachiowak. She has a phD in biology and is also an MS patient herself. The writing was fresh, and the book as a whole was honest(in that it's personal for her, and she was very open about her own experience) as well as  well-researched, and concise.

Hang in there.

Best,
Sadie

[mark_a]

I wouldn't be discussing medication with the doctor, I'd be investigating where I could get CCSVI treated.

I'm really suprised it's not discussed here.

http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/

[maxthecat9196]

Hello,

I felt both vindicated, and later angry- because that meant I wasn't going to be well again.  Then, ironically- when my dx was recently removed (I'm on my way to a new neuro for a tie-breaker.  One neuro says MS.  The other says "Not yet".) I was angry about that too.  

Anyway, at least you have a reason to go with the problems you've been having.  

As to people's reactions:  I sometimes wish that people would forget.  I would love to just have a normal conversation with my friends, instead of always having to reassure them.  But I am grateful for everyone's love and acceptance.

Tammy

[Sparkysarah]

Hi Jacks mom

I am also sorry to hear of your dx and it is such a shock, even when you may have been expecting it. Allow yourself time for it to sink in and to acknowledge your personal loss. However positive one can be, and beleive me I am a positive person, it changes your life. However it does not have to change your goalposts, but you just may need to factor in that it may take a little longer, or a bit more planning and being kind to yourself when things take longer than expected.

I think it is really important to be informed and to read around. I was dx'd over 18 months ago and still feel a newbie and am learning new things all the time. If you have not had them checked, get your vitamin D levels checked. (My latest discovery that many people with MS have low vitamin D levels..but you can read my recent post about this).

Anyhow at least the waiting is over, you have found a great forum to seek support and answers to questions and there are some lovely empathic, kind folks here who genuinely care.

With best wishes and welcome

Sarah x

[Lulu54]

Well Tracy, how do you feel 24 hours later?  Don't lose sight of the fact that you are still the same person before this label was permanently affixed to your name.

I have to smile at your decision to lay low with this over the holidays -  You will enjoy those times so much more without the conversation centering around your health and your prognosis.

You have lots of good information here and I hope you will take the time to digest it and pick what works for you.  
Being overwhelmed when it becomes reality, is not unusal.  In fact it is the norm.  Give yourself lots of time and room to understand what this means.

Welcome to this side of the mountain - the grass isn't necessarily greener, but it is good to know a name and have the chance to be proactive.

hugs,
Lulu

[Jacksmom516]

I am happy to have a name to what is wrong and this may be the one time in my life I wish I was wrong!  But I knew all along that I had this disease - Now to get past being overwhelmed and decide on a DMD -  that is the next step trying to decide between Copaxone and Avonex will continue to research over weekend and let Dr know on Monday.

Thanks to you all for your words of encouragement and wisdom having traveled this road before me.  

Tracy

[anon07072023]

Is it wrong to say that congratulations are in order?  At least that's how I felt when I finally was diagnosed.  I felt vindicated.  All along I knew that's what it was - it was just getting the neuro to jump in with me.

Of course no one wants to have MS. But at least now you know, and you can start moving forward and taking positive steps towards your health.
And I 100% agree with what Sumana wrote - at least that has been my experience.

-Kelly

[debgen]

I know exactly how you are feeling. After years of being in limboland I was finally dxd about a year ago. At first I also needed some time to wrap my head around it. Then I started on Copaxone and some other drugs I felt really overwhelmed. This forum really helped me out a lot! Everyone on this site has been very helpful an understanding. It made me feel less alone. I hope we can all help you too :)
Take care and hang in there!
XXXXXXXX
Deb

[Red_Star]

I don't have MS. But if i was in a wheelchair i'd be all for trying out the 8 natural laws. :)

[Sumanadevii]

.....and so, Redstar, has this eight natural laws cured you?

[Red_Star]

In Australia, your date would look like this 13/12/11. :) Search youtube: "Amazing healing. This will make you cry with joy." video.  For 11 years she was in a wheelchair due to MS and doctors said she will never walk again. She followed the 8 natural laws of natural healing and now she walks a mile a day.

[Jacksmom516]

Funny you should say that I have not told may people yet but one of the ones I did tell said that same exact thing!  If I had his money it would be vastly dfifferent!  I wouldn't have to take care of a house and yard and work two jobs - just spend time taking care of my self!

Thanks to all for the encouraging thoughts - I know it is better to know but just overwhelming!

[meg321]

also, they never fail to say "look how well Montel Williams is doing"
and I think or say,
"but look at how much money Montel Williams has"..sorry to name drop but his name came to mind.

There are so many things that can be done if only the money was there and most of us don't have it.. so we just do what we can do.

meg

[kwarendorf]

The bad news is you have MS. The good news is you have MS :-) At least now you know.

[meg321]

wow, i clicked wrong and thought I lost my whole message.  That is so exciting, it hard enough to put these messages together without losing it.

I am so glad they changed this feature

anyways,,,,,,,,,,,,

hugs, meg

[meg321]

I'm sorry it hit you so hard but now you know what you need to work with unlike others who are still waiting for an answer..That would be far worse for me.  And that is just my thinking...

Sumana, I was just thinking the same thing, we nomally do not look as if we have a disease like MS.  I found myself trying to prove it...

Also, i find that my friends just don't talk about it, never ask, nothing !  Not sure what that is all about...but it only bothers me when I am feeling bad or depressed and then I will find any excuse to strike out.

You have found a great support group on here, and so many times some of us can't get out that it makes this group even more important.

Have a nice holiday....and we will see more of you on here OR see you on here more.   I am always trying to figure out how to write things now,,,,

[summerluvr]

Su you are so right!  accept in my case it's not I know someone, but instead I am compared to a well know (Canadian) actress who has Myeloma and is now back on the entertainment circut telling everyone how fabulous she feels after the stem cell transplant and completely healed. So everyone says, "so and so has myeloma had a transplant and is totally fine" implying I should be perfectly fine after my transplant and cured (myeloma is not curable, treatable but prone to relapse).

[cjldb]

It is tough to hear. I thought I was prepared too and I was somewhat but there's something different when you hear it's official. Thanksgiving was my first holiday with MS. There was lots of talk about it, lots of "you look good" conversations, and lots of "you need to rest, are you ok?" so I can't say I blame you for waiting. The care and concern is nice but it can be at bit much at times.

Hang in there! Lots of us are learning to deal with this right along with you.

[Sumanadevii]

Sorry Jacksmom, you are unlikely to get "poor you looks".  You are more likely to hear "I know someone that knows someone that has MS.  They are working full time, climbing mountains, entertaining at the beach, running marathons, etc".

I am sorry for the dx.  It is hard and take time to work thru it.  Hold those that will listen close to you.  They will be the ones that will be there for you.

Sumana