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#1 | |||
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Grand Magnate
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Hi all!
Sorry I haven't been on in a long, long time -- but life's been crazy lately. Started a new job early this year, and I haven't been online as much as I used to be. Then the whole "we're taking away" and then "we're giving back" the MS diagnosis put my head and emotions through the wringer. MS stuff has increased since June. Down to three options at this point -- Ty, Gilenya, or nothing. Been through the slew of tests required to get on Gilenya with only one more to go. So looking at that one possibly starting in January. Thankfully, first dose is taken at the hospital where I'll be under observation for six hours. Possibility of heart slow down is scary, I have to admit. A little scarier now with the recent news regarding that poor person (their family is in my thoughts and prayers). But some of the things going on MonSter-wise have been concerning, so hubby and I agreed this is my final shot to try to use meds to battle this. Giving out ![]() ![]() ![]() ![]()
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Strength comes in all types of packages, even those you don't expect Dx'd MS 2007, Fibro 2009 |
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#2 | ||
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Senior Member
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I wish you all the best with whatever medication you decide to try.
For myself I'm a huge believer in being on something with the hope that it will help me fight this miserable thief of a disease.
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He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion. Anonymous |
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#3 | |||
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Grand Magnate
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Moose and now you! It's like old-timers week here at NT. Gilenya (Fingolimod) was one I wanted to try. It's still in Clinical testing for PPMS at Hopkins. Ironically 2 of my doctors ran/run the trial. If my EDSS wasn't so high I'd be in it. Alas........
I had an RR friend, heart rate and anything else related to med, never effected her in the least. She loved the Med.. Best to you!!! Please let us know how it goes.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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#4 | |||
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Member
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Have you thought about LDN? For me it's a pill or nothing. I just finished a Gilenya Study, 6 mos. I want to stay on it cause needles and infusion scares me. Gilenya is so new and expensive. I hope it works for you. I didn't have any anxiety, just pop a pill and go. All my tests came back normally but I did drop weight. I don't know if it can be attributed to MS fatigue or the Gilenya.
Good luck with whatever you choose. |
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#5 | |||
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Wise Elder
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Hi Fin!!! Welcome back!
I think its tough when they give a dx and then take it away and then give it back. Emotionally that must have been so difficult for you. ![]() I don't know much about Gilenya. However, I understand that your options are limited based on past experience. I am glad to hear that hubby is behind you, well he always has been which is awesome! I hope to see you posting more! |
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