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Old 04-30-2013, 06:34 PM #11
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Thank you for your kind words, I am doing a little better today and was able to accomplish a few things I needed to get done. I will have my MRI tomorrow and a follow up next Wed. I will post more as I get access to a laptop.....
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DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE




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July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
.

10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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Old 04-30-2013, 06:49 PM #12
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((HUG)) I've only been here about a week, but I came here because of many of the same emotional feelings you are having - my daily physical pain differs from yours - but the emotional support that can be found here can be impressively overwhelming!
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Old 04-30-2013, 08:21 PM #13
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Default Hi amy

Hope all is well for your MRI. You will be in my prayers. It is always good to find out what is going on. ginnie
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Old 05-01-2013, 09:31 AM #14
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Amy,

Everyone has given you sound advice, often from personal experience. There is nothing more I could add that wouldn't be a repitition - so just know yet another person feels for you.

And as for where to turn to? Your NT friends are one of those places to turn to {{{Amy}}}
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Old 05-01-2013, 09:51 AM #15
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Wow...you have a boatload to deal with hon...
I'd get on the phone with the local MS society...they have advisors there who might be able to help you find financial aid, etc.
As for feeling alone...my late sister picked a couple of doozies as mates. One didn't work, took her paycheck to the racetrack, robbed my dad's place of business after he'd gotten him a job, and tried to rape me. She eventually divorced him, but later remarried him. The second creep was sexually abusing her kids behind her back...
when I asked her why she stayed with them, she said, "You don't know what it's like to be totally alone"...this woman pulled herself out of poverty, became a nurse, and was very giving and loved by all who knew her...except herself. She didn't think enough of herself, and stayed with these creeps far longer than she should have.
You are not alone...reach out to family, friends, counseling, however you can find information, nurturing and help. But don't make your life more complicated by being codependent on someone who is unhealthy...you have to take care of yourself.
Ok, off the soapbox now. We will be thinking of you and praying that you find the resources to sort through all of the crises you are experiencing...hugs and true caring reside here...don't forget about us...
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Old 05-03-2013, 11:33 PM #16
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So I got a call from the Dr's office today about my MRI. My cervical and thoracic show no new changes, however I do have 4 new, active lesions showing up in the brain, which explains what has been going on...

I will be seeing her on Wed morning to review the results and discuss a plan to 'attack the attack'. I have been having sharp pains under my ribcage all day and now it has turned into the full dreaded hug...blah :-(

I can't help but feel disappointed with this new activity, as I was REALLY hoping that the Tysabri had stopped the progression since I haven't had any new ones since I started my infusions in Jan 2010. Oh well...hoping I will get a 'recharge' and start doing things again soon
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DO WHAT makes you happy, Be with WHO makes you smile, Laugh as much as you breathe & LOVE as LONG as you LIVE




.

July 2006- First significant SXs, suspect it started back in mid 1990's
1/21/09 - Positive MS Dx
2/17/09 - 2nd Positive MS Dx
4/2/09 - MS Dx 3rd Neuro - finally found the Dr. who has the characteristics I was looking for
.

10/8/09-optic neuritis flair, Cog Fog, chronic headaches
5/4/09 - 12/15/09 Copaxone
1/15/2010 - First Tysabri Infusion - 3/25/16 - Last Tysabri Infusion
3/3/16 - signed the documents to start the Lemtrada journey
4/25/16. Lemtrada begins.
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Old 05-04-2013, 08:09 AM #17
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Hi Amy

There are two things that never fail to impress me on this site. Number one, is the strength, honesty and ability to reach out, that the members here show when all h3ll is breaking loose and life is getting really hard - the other is the wisdom, kindness, care, and sense of community (no matter how far the geographical spread) that people show to one another.

Amy, please don't sell yourself short, you deserve more than to be a 'convenient girl'. You have been given fantastic advice on this thread - please take it on board. I don't have much else to offer, I just wanted to say that I am sorry that things are bad for you right now, and I hope that it all gets a lot better for you really soon.

Hugs

Lyn
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Old 05-04-2013, 02:16 PM #18
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Hi Amy! I am glad to see you posting again. You have been missed. I'm sorry to hear about all that you are going through both physically and emotionally.

I agree with others . . .Don't go back just because you feel lonely. With time, that loneliness you are feeling will subside. Be strong and be tough.

Our emotions do have an effect on MS and can cause an exacerbation. Additionally, our recovering time from an exacerbation can be prolonged by emotional stress. Trust me on this one as I have been there once and that exacerbation too a while to resolve. Are you on any type of AD? If not, discuss this option with your dr. as it may help you more than you think.

Have you looked in to your states health insurance? It may be a better option for you than Cobra and far less expensive. I'm sure you would qualify since you are now unemployed. And, if I remember correctly, you have little ones, right? They could also be covered. Please check in to this as it will help with some of the financial stress you are experiencing. Also, it may be a good time to think about applying for SSDI. Discuss this with your drs. as it is better to apply with your drs. support as it will help in the decision.

I really hope things start turning around for you. Please check in and let us know how things are going.
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Old 05-04-2013, 09:01 PM #19
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Quote:
Originally Posted by amyblake View Post
I'm feeling sorry for myself and don't know where to turn.

Go ahead and feel sorry for yourself, it's ok and what you are dealing with ATM is really really stressful so you're entitled to do so.
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Old 05-04-2013, 09:08 PM #20
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Sorry to hear you have new lesions despite Tysabri...
This disease has a mind of it's own, doesn't it?

Keep fighting, asking questions, try to find out new ways to fight this disease...and don't give up on yourself.
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