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Avatar universal

Cynical newbie here.

I'm new here. DX came this past December after   experiencing what I discovered on Google was Lherimettes. MRI showed a couple small inactive lesions and the active lesion on my cervical spine, positive spinal tap and evoked potentials were normal. The whip cream in this sundae is my Dad and two of his sisters have have had it. My Dad died in July 2007, one aunt in January 2006 and one is still alive.  The cherry of course is that after being told most of my natural born life that I would never have MS, I was diagnosed at 32, the same age my Dad was.
  I started Copaxone about 10 days ago. So far, so good except I am super underweight so my injection sight options are slim.
My emotions you ask? Angry, scared, resentful. Pretty much in that order.
16 Responses
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1917408 tn?1421952040
Thank you for this post! It is very encouraging to hear of people like your dad!

Valerie
Helpful - 0
Avatar universal
Unfortunately there aren't any near me:( Do you have any suggestions or words of wisdom on injection sight lumps?
Helpful - 0
Avatar universal
Unfortunately there aren't any near me:( Do you have any suggestions or words of wisdom on injection sight lumps?
Helpful - 0
645800 tn?1466860955
I am also one of those with a family history of MS. Dad, cousin ( dad's side of family), niece (brother's child) , brother and of course me.

I actually find it a kind of blessing that my dad had MS as it taught me to better handle it when I developed symptoms. He as active all his life until he died in 2002 at the age of 83. When ever this gets me down I try to think about him outside building a ramp for his home ( sister paralyzed due to spinal injury) at 80 years old. Sure he had to wear braces on his legs and use a cane for walking, but he never let it get him down.

Dennis





Helpful - 0
738075 tn?1330575844
Would that they'd skip the fuzzy blanket and lower the cost of the darned drug! (sorry for the thread 'jack, Kelly)
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1831849 tn?1383228392
"Any time you get into any of these pharm companies, they send a wealth of literature and send invitations to local luncheons/dinners"

And with Tysabri you get a soft, cozy blanket! :-)
Helpful - 0
738075 tn?1330575844
Welcome, KellyBelly!

I was only on Rebif for 4 months, and I've never tried Copaxone, but I am on Tysabri.  Any time you get into any of these pharm companies, they send a wealth of literature and send invitations to local luncheons/dinners with speakers that can give all kinds of info on living well with MS.  I've been to quite a few, mostly early on in my diagnosis, and got lots of questions answered.

I'm sorry to know about your Dad, and aunties. It must have been difficult watching their struggles.  I send (((hugs))), and good thoughts.

With the injections - do you/DH use the auto injector?  You can adjust the depth of injection with some of them - might be easier to be able to rotate sites.

Good Luck, and a belated Welcome.
Helpful - 0
198419 tn?1360242356
Glad you came back. You can do it :) I already see that drive in your words here. Change is def. hard, but staying in the game will get you past those hurdles.

Check this out for lectures in your area...
http://sharedsolutions.com/Living-With-MS/Events-PatientPrograms.aspx
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Avatar universal
Thanks Shellybelly!=) I hope that the day comes, sooner than later, that I can move beyond what I lived through with my Dad and accept that this CAN be different. Change is so hard!! There's so many things I need to do differently (diet, exercise). The copaxone is going pretty well I have to say (knock on wood). My hubby does them mostly. I've done it twice by myself. They've just started getting a little itchy, a few small lumps underneath. But I can't complain. I've read that using an ice pack afterwards helps.
Shel, I have not attended anything yet, but I'm in contact with Shared Solutions.  Do they do regular lectures? Ill def look into that.

YOU GUYS ROCK =)
Helpful - 0
198419 tn?1360242356
Hi KellyBelly,

I'm ShellyBelly, hahah Funny, the family still calls me that after many years of child bearing.

Nice to meet you. I'm sorry for your loss, and your dx. So happy to see you are on meds, this could completely stop this beast. It's what we are all counting on.

Though your fears are understandable, you've seen the disease 1st hand, don't be afraid of it. There is more in  our arsenol now and you've got the biggest in hand.

Do you attend the newly dx'd lectures? I'm on Rebif but I went to a shared solutions one once, and it was fab. Even intro'd a dermatologist to address those injections when thin, etc. It's super important to get those meds into the sub-q layer so it works properly.

Happy to have you, and looking forward to seeing you around.
-Shell
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1760800 tn?1406753451
Hello

Wanted to add my welcome.  I too am recently dx'd and you are absolutely right.  Your emotions are everywhere.  Somedays I am fine and others the only thing I can think of is having MS.  The best thing to happen with my dx was finding this forum and the people here.  They are knowledgeable, kind, understanding and even though we will probably never meet most of them you will come to find that you will call them friends.  

Know that you have friends and support here whenever you need it!

Take Care
Tracy
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1858011 tn?1319837353
Just wanted to say Welcome and so sorry that your going through all of this.  Things will get better and your dad may not be here but, is looking down on you so proud and encouraging you to fight and stay positive.

Hang in there this is a great forum with a lot of very supportive people that will see u through this process.  Just know your not alone.

Take care
     Misty
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Avatar universal
And I had a typo in the original post; my inactive lesions were in my brain.
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Avatar universal
Thank you so much. You're responses brought tears to my eyes. Everyone tells me the same thing about how things have changed since my dad was dx'd (1980) and that may be my biggest obstacle ....seeing past that. I've literally lived my whole life dealing with this. I watched the worst of the worst. Its awesome to have the support that you guys have here. Again, thank you =)
Helpful - 0
620048 tn?1358018235
Welcome to our little family !!  Sorry, I have nothing to add, Lulu has said it better than I can...

Great people here,

hugs, meg
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572651 tn?1530999357
Hi and welcome to this special place where angry, resentful and scared are just the tip of the emotional iceberg.  Dealing with this diagnosis is hard enough, but with your personal history with MS, it can only be so much tougher.

I am sorry you have joined our club here - but I do want you to keep in mind that MS today is not the same disease of 20-30 years ago.  The drug treatments that are available to us weren't yet invented.  We have great options for treatment that will usually slow or even stop the progression of MS.  This is great to know and there are a bunch of new drugs that will be approved in the coming year that add even more choices.

Fortunately only a small percentage of People with MS end up needing a wheelchair - and  I will certainly hope that is the case for you as well.  We can't guarantee what the future is going  to bring, even if we didn't have MS.  Now is not the time to be worrying about long range problems that may or may not ever occur.

This diagnosis is quite the ride - the emotional roller coaster will slow down eventually but for now I hope you will be kind to your self and take some time to just absorb this news.  It has to be quite the shock and worry.

Please come back and feel free to share you thoughts and ask your questions - we are here to support you on this journey.

best,
Lulu
Helpful - 0
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