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Old 01-16-2013, 09:26 PM   #1
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Official word is that...

I'm joining the MS club. I'm actually ok, I think. I'm glad I was prepared & knew what I was walking into - I think that helped. The people around me are taking it harder than I am. I know that maybe later it will hit me, but right now, I'm staying positive & I'm doing ok. I'd rather have MS & have an answer than have no dx & be swept under the rug (which, btw, has happened before with unrelated health issues).

It turns out I have 3 small lesions on my brain. My neuro showed me the images, explaining that I was looking at Dawson's fingers. He seemed surprised when I told him I knew the term. I had to laugh & tell him that I have done my homework, seen my MRI reports before he did & pretty much knew what I was facing before I walked in the door. I also have 6 (if I remember right) lesions on my spinal cord. We decided to start me off on Rebif as soon as we get everything set up. He is also referring me to an MS specialist with the teaching hospital up north because he wants to ensure I get the best care I can & he wants their input on treatment. I'm actually really starting to like him. He didn't sugarcoat anything BUT he was very positive about our ability to manage this, which made me feel better. I'm glad that while he wants a specialist's input, I'll still be seeing him.

So, I guess that's that. I'm joining the club, but I'm hopeful & determined to keep on keepin' on.

 
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Old 01-16-2013, 09:46 PM   #2
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Re: Official word is that...

Thanks for sharing and WELCOME (we need an official MS emoticon!).

I am glad you are doing well. Do watch for any signs of any pity parties and do not attend them! I attended a very short lived one in 1982 and never again. They are lonely and you do not get any benefit for attending!

I am pleased that your doctor did not sugarcoat things and took the time to go over your images. This is something I enjoy about my neuro too. I appreciate her sticking with the facts.

As you start your journey, learn to discover or rediscover yourself and what makes you tick. Life with MS is not nor need not be a short journey. I have been on the journey for over 35 years now and while I would like to change some things, I do not have any regrets. You will be "mom" all your life and one day get the "grandma" promotion, but relax and take your time. You will have both good and bad days, but when you count your blessings, the good days certainly outnumber the bad and even the bad days your life will be blessed.

Thank you for sharing your news, and again, welcome to the MS family. I encourage you to help others who can learn from your experiences and I encourage you to share your journey. There are some of us "ahead" of you in the journey and I know you will likely have questions. Ask questions and share with others; in doing so the journey for those behind you is made easier and your own path may be smoother. None of us need feel alone.
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Eternally blessed and eternally optimistic!<><

 
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Old 01-17-2013, 09:02 AM   #3
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Re: Official word is that...

It is very well known at work already that I have a no pity party policy. I don't throw them, I don't attend them, and I don't want anyone to throw me one. They are welcome to buy me a drink & throw me a "we'll kick this thing's butt" party, but no pity party.

I agree with you that the good things will always outnumber the bad. Sometimes, it doesn't seem like it, but to borrow from an old, dear friend of mine: that's a feeling, not a fact. When all is said & done, my husband & boys alone far outweigh any bad that MS can bring. And when I factor in the many other blessings in my life...I'll be ok regardless of what my MS journey brings me. I've lived a pretty interesting life which has taught me above all else that sometimes, the bad things really just make you realize how GOOD the good things are.

 
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Old 01-17-2013, 09:58 AM   #4
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Re: Official word is that...

With such an outlook and attitude, you will go far! I hope you can celebrate your "wkttb" party every day!
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Old 01-17-2013, 04:26 PM   #5
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Re: Official word is that...

HI Cira.
So welcome. Officially. You were already an honorary member...but now its official. And, as always you remind me of me. I started out with many more lesions than you- also saw a regular Neuro who I grew to love- was sent to an MS specialist for extra care- decided to use my regular neuro for my first round of Disease Modifying Drugs, and started on Rebif.....When you see the new neuro, if you feel that he is not saying anything that you dont already know, you can choose to let your regular Neuro be the one you use for drugs- its kind of helpful that you use the guy closer to you and maybe only see the specialist when needed....its up to you.

Rebif is one of my specialiies. I can help you get through just about anything you need Rebif related. Through the 5 years I was on it, I learned all the tips and tricks- so shout out when you need help, ok?? I did really well on the drug- but I can tell you the first month was easy, the second thru third month were brutal, but by the 4th month the "flu like symptoms" had passed and I did realy well on it......I developed antibodies eventually, it stopped working, but this doesnt happen to everyone. When the time comes for the nurse to come out, make sure your husband is there to help you, but no matter what you do- please learn to inject yourself and not depend on anyone else....I think its a really important thing that no one ever tells you- the independence which comes with knowing you can take care of YOU- and not need anyone else to do this- actually will help your mental state when it comes to getting used to doing the injections. Since you are also like me, talk to the nurse about getting on a Tuesday, Thursday and Sunday schedule...youlll like having your weekends injection free (up until Sunday) and live like a normal person on the weekends! Youll see , this will all make sense eventually.

Ill be here for you when the time comes..

You have a great attitude- youre strong- and youre going to do just fine. Remember, I now have over 100 lesions AND I work, am doing my post graduate degree and have 3 kids...life with MS doesnt mean anything other than having to listen to my body and try to avoid unncessary stress. If anything, I look better than ever. I eat right, exercise 4 times a week and take time for ME. Something I never really did before.

Congrats on no longer being in limbo land. This is just another step in a new direction..
Hugs,
Nikki
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Old 01-17-2013, 09:39 PM   #6
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Re: Official word is that...

I'm sure I will have so many questions for you when I start the Rebif. I'm nervous about the side effects, but hopeful that it will help me in the long run. I fully agree with you about learning to do the injections myself. I've had people offer to do them for me, but I have politely declined. I know I need to be able to do them myself- and the sooner, the better. As far as a schedule goes, my "weekends" are Sunday & Monday...so would something like a Monday, Wednesday, Friday schedule work better in my case? I'm definitely in favor of being injection free on my weekends. Sundays are our family days, so I definitely want to be in good shape on that day.

I definitely plan on keeping my regular neuro & sounded like he intended to continue to care for me, which is great. We're actually developing a pretty good dr-patient relationship.

All in all, I'm feeling very positive. It's a lot to swallow, even when you're prepared. Anxiety has always been a minor issue for me & sometimes I have to work to keep that under control. But I will adjust, that much I know.

 
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Old 01-18-2013, 04:23 AM   #7
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Re: Official word is that...

Good girl! You are on the way to a positive experience!

Yes, in your case, a M-W-F schedule will work best for you........and stick to it.

Rebif is titrated. That means the first 2 weeks youll only inject 7 mcgs of the drug, to get your body used to it. Thats nothing. You wont even know you injected it...it is also why the drug doesnt start working immediatey. You have to build it up in your blood stream. The second two weeks, youll inject 22 mcgs- at this point, you probably still not get any side effects. You may have some soreness in the injection spot- but no flu like symptoms to mention...its when you hit full dosage, 44 mcgs, that you will start to feel (if you are going to- not everyone does get them) the side effects. I spent many nights waking up nauseaus- feeling like I wanted to throw up, but not actually doing so. But Cira, I never missed a day of school OR a day of work. The side effects last about 3 months from when you hit 44 mcgs (and the drug kicks in after you have been on full strength for 6 full months) ...then one day, you wont have side effects ever again.

The good news is that they only last from about 2 hours post injection until about 6-8 hours later. If you can do it before bed, youll sleep thru the worst of it.

I found that 1 Aleve worked better...and it lasts 12 hours. massage the area you inject immediately after injecting- this dissappates the drug in the body- I found that massaging with Arnica Gel, which is sold in any healthfood store will help reduce the pain/ redness post shot. I went through about a tube of arnica every 6 weeks. I used it after every shower and after every injection- it truly helped to keep my body from looking like a bullseye! ive passed this along to many a MSer over the years and they have all stated it made a positive difference.

No more Tips until you actually start. I dont want to overwhelm you. But Im definately in your corner and here when you need me.

Youre smart to know that doing this yourself is really important! They make an autoinjector, which you will recieve, which makes it virtually painless and easy to do- wait until you see how easy this actually is. Its the anxiety which kills us, not the actual doing it. In fact, I think actually doing it empowers us- gives us a reason to say "Im going to control this MS. Its Not going to control me". And you will.

Nikki
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Last edited by Administrator; 01-18-2013 at 07:43 PM.

 
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Old 01-18-2013, 01:57 PM   #8
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Re: Official word is that...

one other tip is if you are able to get the rebismart machine --go for it---it makes injecting so much easier(if you are like me and cant stand the sight of a needle)...am just starting my 15th week of rebif and my 5th week at full strength.

 
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Old 01-18-2013, 05:36 PM   #9
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Re: Official word is that...

The Rebismart is the autoinjector which I mentioned. I honestly didnt like it- however it does make reaching the hard to reach places easier. I only used it on my arms, because its tough to pinch and inject at the same time with one hand.....but many people are commenting on the fact that the Rebismart is a great tool if you are needle phobic, which you havent once mentioned that you are- but in case it bothers you.....

Either way, Rebif is a good choice for you to begin on....I think youll adjust well to the drug and the idea of injecting...
Nikki
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Old 01-18-2013, 09:15 PM   #10
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Re: Official word is that...

Thanks for all of the advice! I bought some arnica gel today so that I'll have it when I start.

I'm not particularly needle phobic, but I don't love them, either... so the autoinjector might become my friend. I'm definitely glad that I at least have the option!

 
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