To a new year...how is everyone?

A board to discuss Revimmune as a potential therapy for multiple sclerosis

To a new year...how is everyone?

Postby RedPenguins » Mon Jan 12, 2009 12:41 am

Happy New Year everyone... i think!

It's been awfully quiet here lately...so just checking in to see how everyone is doing...

I finished a 6 day course of IVSM (3 days @ 500mg, 3 @ 1000mg)....that was right before Christmas. Been recovering well enough....still some issues, but nowhere near as I was before HiCy.

I did end up canceling my travel plans as I just felt a little too weak and had just finished the IVSM a few days before I was set to leave. The thought of traveling just made me feel sick thinking about it. Not to mention, I would be traveling to the place where at Last Christmas - I had the first signs and symptoms of MS. Maybe that just freaked me out the most.

I hope everyone is doing well - or well enough!!

Keep us posted. It's too quiet here...

~Keri
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Postby pvns2005 » Mon Jan 12, 2009 9:26 pm

Hey Keri,

Doing ok. This cold is immobilizing though.

Were you going to come to North Alabama for Christmas??

Chris...
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Postby RedPenguins » Thu Jan 15, 2009 8:58 pm

Hey Chris,

I actually cancelled my trip to Alabama (Decatur) because of my health. :(

I'm hoping to be visiting JH at the end of the month/early next month to see what is up with me.

We had a few cold days here (30s at night?)....and now...we're back to 80-85 degree days!! What is this?!

How's your health? How do you feel? How is Val?
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Postby pvns2005 » Fri Jan 16, 2009 8:53 am

Val moved just down the road from me. She's doing good with her new business. I get a massage from her every month. If you come to Decatur, remember I live just 5 miles from there, you need to let me know.

My health is so so. The cold really locks me up. I take zanaflex to loosen my muscles so they are not so stiff. My last MRI in December was clear. So far so good, knock on wood.

I am sorry to hear about your reactivation Keri. I was looking at my lab results from JH and it showed that my WBC was not even registering on the results for about four days. They did not go back up until after i was readmited to the hospital. That may have something to do with the "Reboot". Talk to JH about that. I think Steve was in a similar situation as me and got readmitted.

Take care,
Chris..
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Postby Jamie » Fri Jan 16, 2009 3:22 pm

Hi All,

Just got back from the Maldives - veliganduisland.com if anyone is interested!

It was kind of emotional for us as this time last year was when Mel was at her worst and the holiday (same island) kinda sucked as a result, she was unable to walk at one stage and could only stay awake for a couple of hours at a time.

What a turn around after a year.

Now she had only one bad day (just some minor double vision and hand tingling) and that was caused by overheating and stress (we'd had a row that day, 100% my fault of course ;) and her old warning signs flashed).

Things are great with her MS, unless completely exhausted or overheated she has no real symptoms.

6 month MRI showed no activity and her two 'black holes' had disappeared.

No EDSS test as we couldn't make it to Baltimore, but she'll be going in March.

I am so grateful that she was lucky enough to be treated with this so early into her MS (6 months post -diagnosis) with so little disability accrued (although 3 relapses in that period was frightening). No chickens are being counted and we still have the mindset of 'just a few years relief', but the treatment is so promising, even if it takes a couple of goes to get rid of every memory cell.

Good luck to you all,

Jamie
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Postby Davis » Sat Jan 17, 2009 3:13 pm

Jamie wrote:Hi All,

Just got back from the Maldives - veliganduisland.com if anyone is interested!

It was kind of emotional for us as this time last year was when Mel was at her worst and the holiday (same island) kinda sucked as a result, she was unable to walk at one stage and could only stay awake for a couple of hours at a time.

What a turn around after a year.

Now she had only one bad day (just some minor double vision and hand tingling) and that was caused by overheating and stress (we'd had a row that day, 100% my fault of course ;) and her old warning signs flashed).

Things are great with her MS, unless completely exhausted or overheated she has no real symptoms.

6 month MRI showed no activity and her two 'black holes' had disappeared.

No EDSS test as we couldn't make it to Baltimore, but she'll be going in March.

I am so grateful that she was lucky enough to be treated with this so early into her MS (6 months post -diagnosis) with so little disability accrued (although 3 relapses in that period was frightening). No chickens are being counted and we still have the mindset of 'just a few years relief', but the treatment is so promising, even if it takes a couple of goes to get rid of every memory cell.

Good luck to you all,

Jamie


It is wonderful to hear that you are both doing so well. Thank you for the update.
Have a healthy 2009.

Fondly,
Marlene Davis
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Postby HiCy » Sat Jan 17, 2009 4:59 pm

Well I am 16 months out and for the most part things are steady. I did not do an MRI at my 15 month. I always feel they make me feel crummy. I am going back in June for a 21 month check up and then on to 24.

As I have written before some things are better in regards to stamina and some areas of strength but my hip flexors have gotten worse but that was back last spring and I have to say that things have been stable since then. If I listen to Dr. Kerr thing may get better but only time will tell.

I have read in some of the Campath studies that some patients who resonded well to treatment continued to improve from disability three years out from initial treatment. I am not aware of what their disabilites were but that fact that improvement continued that far out is encouraging.

Good luck to the rest of you.

HiCy
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Postby chrishasms » Sat Jan 17, 2009 9:28 pm

Well my disability decided to take every positive thing I said and used it against me thbbbbppptttt. They dropped me but I have paperwork from my Doctor here in CO as well as Dr. Kerr so it should be back shortly.

I have a MRI at the end of February and I will be KO'd for the full spine and brain.

MS wise I have good and bad days. I'm no worse than I was in November when I reactivated. I am actually curious to see if anything else has fired off. I feel stable right now. I twitch from time to time, my balance sucks, my legs get tired bad if I over do it, my right arm dexterity is no better than Septemberish, but on the flip side, fatigue is gone (unless I over do it), I can pee, I'm regular, and I am still better than last year at this time.

I guess I'm just in a holding pattern...By the way ya'll Happy New Year!!
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Postby Lyon » Sun Jan 18, 2009 6:31 am

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Last edited by Lyon on Sun Nov 27, 2011 10:18 am, edited 1 time in total.
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Postby chrishasms » Sun Jan 18, 2009 10:24 am

Oh oops- my disability insurance. Sorry lol--MY PARENTS ON MY HEAD!! LOL
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