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Old 08-10-2013, 06:28 PM #1
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Default A little update on how Im doing

Started Tecfidera, reluctantly I may add, a few days ago, and so far no problems. Im still having the swallowing/choking issues and neuro still wants to do swallow test but with no insurance, I cant do it.

Im down to eating only yogurt and rice pudding, mashed potatoes and if Im "feeling lucky", I'll have some string cheese. Neuro messed with my meds to see if they were making me slur or if it was the MS and glad to say it was the meds!

But the new way he was having me take the meds I was in worse pain so I went back to the old way and surprisingly Im not slurring. Just more numbing and pins and needles and severe stiffness in morning. Ive been waking up in the morning unable to move and the pain, OMG, Im screaming!

My whole body has stiffened up so bad I cant move. Neuro and I cant seem to find a med combo to help or stop this. He said that when my medicare kicks in he would like to put in the baclofen pump and see if that helps. I totally agreed with him!! Im tired of waking up stiff, unable to move and in pain.

I sent away to the MSAA for a bathtub grip and a wheelchair and the easy grip silverware and they finally came in. Its going to be so nice not to have to make sure places have chairs for me when we go out. And now my hands wont cramp up when Im eating! Never thought Id see the day Id get all excited over silverware... lol.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 08-10-2013, 07:11 PM #2
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KL- So far so good on the Tecfidera- very good! And it is really great that the slurring you had is gone.

I am sorry about the spasms and so much pain.

And thanks to the MSAA for helping you out in tangible ways.)

BTW, I know you have been worried about quite a few problems but I want you to know that you express yourself well on "paper."

Best to you,
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Old 08-10-2013, 07:49 PM #3
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We're right here with you Kittylady.
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Old 08-13-2013, 03:10 AM #4
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i'm so glad some aspects of your tx are helping you and hope others work in the future.

i've heard MSAA is a good organization to get help.

please keep us posted. now i hope the dr can help with the pain. when can you get medicare?
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Old 08-13-2013, 08:49 AM #5
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Guess you're making lemonade out of the pile of lemons life has dumped on your doorstep...great that you're getting aid from the MSAA...

keep us up to date, hon...
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Old 08-13-2013, 10:49 PM #6
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Medicare kicks in in February. I know its 6 months away, but its better than 2 years away. Ive been counting down since I got SSDI. Not much longer. I believe tomorrow I start the 240mg of tecfidera. Bigger dose, so Im still hoping no side effects. Havent had any at all yet. (I say as Im knocking on wood)
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Dx RRMS April 1992
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MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 08-14-2013, 07:11 AM #7
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Quote:
Originally Posted by KittyLady View Post
Medicare kicks in in February. I know its 6 months away, but its better than 2 years away. Ive been counting down since I got SSDI. Not much longer. I believe tomorrow I start the 240mg of tecfidera. Bigger dose, so Im still hoping no side effects. Havent had any at all yet. (I say as Im knocking on wood)
It was hard waiting those 2 years without any insurance.....sure made me appreciate it when it kicked in! It doesn't pay 100% of everything but it's better than nothing. Lot's of folks assume Medicare is free but it's not. The premium is deducted from my SSDI.

I hope the Tec works well for you.
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Old 08-14-2013, 11:05 AM #8
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Congrats KL, I hope the TEC, bigger dose, remains SX free
and works for you.
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Old 08-14-2013, 06:22 PM #9
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Kitty, Medicaid helps pay for medicare premiums if you didn't know.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 08-14-2013, 08:33 PM #10
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Quote:
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Kitty, Medicaid helps pay for medicare premiums if you didn't know.
I'm a little over the income requirements for Medicaid here in Georgia. But it's good that there's help for those that do qualify.
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