Overwhelmed- WARNING- VENT POST

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Overwhelmed- WARNING- VENT POST

Postby TriciaMilitia » Thu Mar 08, 2012 12:45 pm

Hello, Everyone-

I'm overwhelmed. I was officially dx lat month, and I am supposed to head back to the neuro on Monday to decide what I want to do re: medication.
I read. And read. And read. Then I made an 'MS spreadsheet.' Then I shook my skinny fists at the sky and cried out in frustration. :?

After all the toiling, this is my MS Research Summary: (ha)
-All of the injectibles have side effects that are terrible
-The IV options are "scary scary"
-What the heck is this stuff going to do to me in the long run?
-What will happen to me if I do nothing?
-I'm SO lucky to have insurance (+1!)
-Are any of the supplements I'm taking/ my diet working?
-Who will stick around to take care of me?
-What the heck do I do when I can't work anymore?

I've made no progress on the MS front, but I did decide to book a fantastic vacation for my Mother and myself. 8-}
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Re: Overwhelmed- WARNING- VENT POST

Postby DougL » Thu Mar 08, 2012 12:56 pm

TriciaMilitia wrote:... but I did decide to book a fantastic vacation for my Mother and myself. 8-}



good for you. sounds like a great idea.
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Re: Overwhelmed- WARNING- VENT POST

Postby munchkin » Thu Mar 08, 2012 1:09 pm

The holiday sounds like an excellent idea.

Take time to get used to the idea of MS before you make any decisions. If you are just diagnosed and your symptoms are manageble you have some time to do more researching and decision making. There is a lot of good information here in the various threads.

Take care. You will feel comfortable with the decision you make when you give yourself the time to process all the info.
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Re: Overwhelmed- WARNING- VENT POST

Postby Dahlia » Thu Mar 08, 2012 2:44 pm

........ a holiday, what a fabulous idea ! I was diagnosed nearly seven yrs. ago. And, I am still asking myself the same questions. Though, it does seem I've decided not to go on the meds, and have chosen diet instead - for now anyway. But, that's only because my disease activity so far has 'not' been demobilising.... Unfortunately there are no 'obvious' answers - no clear 'right' or 'wrong's' about how to 'act' on this disease or the disease modifying drugs. It's a difficult decision to make, only you can make it. Good Luck, and enjoy the holiday.
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Re: Overwhelmed- WARNING- VENT POST

Postby HarryZ » Fri Mar 09, 2012 9:11 am

I've made no progress on the MS front, but I did decide to book a fantastic vacation for my Mother and myself. 8-}


Back in the mid 90's when my wife's MS started to progress, the option of starting one of the ABC drugs was given. Her neuro told her at the time that taking 2 good holidays a year would give as much if not better results than any of the medications. He told her that in general, the docs were quite disappointed in the results they were seeing in these drugs and that the data given them my their manufacturers wasn't what they were lead to believe.

Harry
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Re: Overwhelmed- WARNING- VENT POST

Postby daverestonvirginia » Fri Mar 09, 2012 11:40 am

I think you have gotten some good responses already, saying it is a good idea to take the vacation with your mom. I had all the same thoughts you had six years ago when I was dx. But, MS is a beast in that no one really can't tell how things will progress in the beginning. I decided to go with Copaxone, the best bet diet and supplements six years ago and I have no symptoms today. No one can say how MS will affect you, but things may not work out as bad as you think they might. Good Luck, Dave
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Re: Overwhelmed- WARNING- VENT POST

Postby TriciaMilitia » Fri Mar 09, 2012 1:38 pm

Thanks, all.
I had a little moment of panic where everything seemed to boil over. Having reviewed my reservations, I'm feeling much better. :)

It is what it is. I can't really do anything more than I am. Other than relax.
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Re: Overwhelmed- WARNING- VENT POST

Postby jab721 » Fri Mar 09, 2012 6:45 pm

Hey! I was just diagnosed last month as well. I didn't do much research on the medication. My husband and I have been trying to get pregnant, so copaxone was the only one that would be safe until I have a positive preg test. That's why I went with the meds I went with. I just started it on Wednesday and had a minor panic attack last weekend before starting it. I looked up some info on the meds and side effects and it freaked me out! I told myself that every medicine has side effects, but that doesn't mean that they will happen to me. I was surprised at how easy the shots were with the autoject, and relieved that the needle was so small (Copaxone has the smallest) and I couldn't even feel it. There was some stinging and soreness and a small welt and redness, but nothing that I couldn't handle. I've been taking them at night so that I get the soreness over with while I'm sleeping.

As far as everything else: the diagnosis and planning for the future. I'm a very positive person, so it's been a little tough for me because so much of the information and support online about ms is so negative and scary. I just have to keep reminding myself that I have to make the most out of today, keep going for my goals and focused on having a great life, focus on my family and friends because they've been amazing, all this while keeping the mind set that I do need to realize that things may not always be this "good", but I will have to wait and tackle those beasts when they come. You can spend your whole life scared of what the future will bring and in the end, you may look back and realize that you missed out on so much because things may not be as bad as you feared. You can't predict the course ms will take in your life, so just focus on today and make the most of it.

Also, I just read a book, "The Winning Spirit, Life Lessons Learned in Last Place" by Zoe Kopowitz. It's an amazing book, inspirational! You can buy it for a penny on amazon. It has a permanent spot on my bookshelf!
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