Day #.... Highlights of the first few days

Gilenya, or Fingolimod, is the first approved oral disease modifying drug for MS.

Happy Valentine's Day to All!

Postby lmacalus » Mon Feb 14, 2011 9:51 pm

So with dad down for the count & mom in the hospital I am holding strong. No repeat of the nerve pain & used no other meds, for pain or anything. So far so good. Am even up to trying to bring 3 kids to Disney for a day trip tomorrow - energy normal, appetite normal, etc. So we'll see how a day of kids and walking goes! Mom's scheduled to be released tomorrow and dad has his new meds so it's a BIG day tomorrow. :o)
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Started week #3 Today

Postby lmacalus » Wed Feb 16, 2011 5:07 pm

So far, so good. Took the kids to disney yesterday - LONG day & spent today running around - TONS to take care of kids, house, mom & dad. Everyone is home now and things are busy. But no symptoms & no complications / side-effects so NO COMPLAINTS here!!!
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Week 3 still going strong

Postby lmacalus » Sat Feb 19, 2011 5:19 pm

So some stressors past now, others in full motion (4 yr old vomiting for 6 hrs last night) and I am coming to realize that perhaps I will nOT catch "everything" after all. Just need good food and some sleep. Cool break. Child getting better and laundry near complete.
Wishing all a well & blessed day/evening!
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4th week

Postby lmacalus » Thu Feb 24, 2011 11:08 am

So still going strong here only side effect seems to be vivid dreams. OK I can live with that! Also went to the dermatologist for a full screening & I am free & clear of anything that even looks pre-cancerous. B/c I'm in Southern California and got a lot of sun w/o trying - I will be using sunscreen daily now and can be checked annually or as needed. But for now, no concerns ;o)
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week #4

Postby lmacalus » Fri Feb 25, 2011 10:28 am

Still doing fine in week 4, side effect of Vivid Dreams - OK, not the worst thing ever!. Back to Neuro on Tues for a quick check-in then 8 weeks till MRI!
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Week 5 down & starting week 6 on Tuesday!

Postby lmacalus » Sun Mar 06, 2011 4:01 pm

Sooo good to feel better/normal. Saw my neuro last Tuesday & she was quite pleased with my progress. Staying the course with a mild herbal regimen to keep inflammation down but for the first time ever my "Pitta" was no longer an apparent "unbalanced" element in my pulse... sooo cool... even she is looking forward to seeing the next MRI & is now starting more patients on this Rx. (I was her first). If anyone is considering G, I for one recommend it. Mild to No side effects, reduced medications & NO SHOTS!!!!!
Strength is up, energy is up & I withstood Legoland for a day in the sun! Enough sun to burn my shoulders yet the heat was NOT AN ISSUE! (For possibly the first time I was able to be out on a warm day, in the sun & play with my daughter :o) Be well,
L
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URI #2

Postby lmacalus » Mon Mar 07, 2011 8:59 pm

Ouch! No plans to stop the G but will be back at the GP in the am for another sore throat - bummer. Hopefully it will resolve shortly. Other that that I feel GREAT!
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Healing nicely

Postby lmacalus » Wed Mar 09, 2011 3:31 pm

Sore throat is resolving on its own, no fever, no issues - nothing a couple nights of good sleep couldn't resolve. All systems functioning... ahhh. MRI scheduled for a few weeks from now - right at my 12 week/3 month birthday... will share findings when I have them.
Be well,
Laura
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Thank YOU!!!

Postby SueZQ » Thu Mar 17, 2011 10:37 am

I want to tell you how much I have appreciated your journal of the first weeks of your treatment. I am going to be starting Gilenya soon, as soon as my pre-tests all get sent to my neuro. And it has been so helpful to hear how on a daily basis you've been handling it.

I hope you continue to have amazing days, and keep those infections away!!!
Warm Regards,
Sue
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So week #7 is coming to a close!

Postby lmacalus » Sat Mar 19, 2011 5:46 pm

And there is NO new issue, no concerns, last sinus infection cleared out again with the assistance of a round of a low-dose weaker antibiotic. Feeling good, getting sleep & I do believe that my libido is commin' round again! (Yeah well, my husband is probably MOST excited about that one - I'm just happy not to stumble or see double :)

Wonderful side benefit of feeling better = more energy = means more activity (the daily stuff, not just libido!) = weight is starting to reach towards "normal".... still a long way to go but what a great treat to see the numbers go down for once. No doubt the reduction in steroid dependancy is also assisting the process.

Hope all are doing well, regardless of the therapy and I'll check back in during week #8.
L
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week 8 comes to a close!

Postby lmacalus » Sat Mar 26, 2011 7:07 pm

Nothing new to report - just feeling pretty normal. sleeping ok and not going overboard with activity. All of my f/u apps are set -all of them phew, so that's an MRI, blood work, eye exam & neuro app. All set & will keep me busy in a couple of weeks - heck will keep me busy for a week in a couple of weeks but I am sooo curious to see how all of my results will look!
Only 4 weeks till my 3 month birthday :o)
Wishing all a good night & a great tomorrow!,
Laura
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Laura

Postby leetz » Sun Mar 27, 2011 1:38 pm

Hello...the result's sound great however, it would be nice to know some of your major symtom's pre G...and how that has changed...like EDSS score etc. How did you walk beforehand? Could you stand for long periods of time? Were you able to work? Thing's like this would be helpful to know...thank you so much for the update's...Many Blessing's!

Leetz
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Some pre-measure data

Postby lmacalus » Sun Mar 27, 2011 8:00 pm

OK I do not recall my scores but they were advancing enough that my neuro put me out on disability for good - as in I am now on ssdi & have qualified for medicare - oh joy ;o(
The walking well, let's just say I had all sorts of gait issues and did a lot of PT, mucho spasticity too. I was on vicodin, neurotin, lexapro, RX motrin, RX naprosen, and I forget the name of the last neuro pain med that threw on a RAPID 30lbs! (Lyrica!)...I was the person who was constantly pulled aside for the "CVS consult" b/c they could not believe I could be breathing on all that drug. Failed on Avonex, Beta-Serum, Copaxone, Rebiff, IVIG, Pulse steroids & LDN b/c my MRI's demonstrated a COSTANT level of inflamation & disease activity... so much so that I qualified for the HALT MS NIH study almost immediately. Was using a cane (have a collection of 3 so there is always 1 nearby) And had to stop working when the MS began to impair my cognitive function I was a Market Manager for a leading respiratory company (globally) & then stepped down into starting up the Market Research & development Division for that same company... u can imagine how had it was to have my manager sit me down to review my work and hear that he couldn't understanding while I was struggling running figures since I had been doing it for YEARS... so awful, but they understood why my MD put me out for good. Fatigue was a HUGE issue & I could no longer be 75% travel in my job either. Standing up for long periods of time... um, well, I still don't do that too often but at trade shows it it was awful! My vision has been quite challenged too - I suffer from duplopia on & off so often I elect NOT to drive anywhere though I do maintain a valid license.
Then thee is the general, bladder/bowel stuff, loss of libido & well, nerve pain from the uncomfortable tingly stuff to the "don't touch me" everything hurt stabbing pain.
The thing is I do have RRMS & many of thee things over time do return to acceptable levels of function for me - never quite to the starting point but close enough that I can accept, work around, & move on.
Many things seem to be turning around for me now - I continue with the PT routines b/c well, the stretching etc. is something we all need along with mild exercise but by far the greatest gain has been the lack of fatigue. Vision has improved, pain went away a few years back when I cult ALL diet foods, sodas etc. & ALL caffeinated products switching to an ayervedic menu which promotes the reduction on systemic inflammation so I cannot credit G for that but I will say it has not returned.
I hope this helps - do let me know if I can be more specific!
L
PS Pre G MRI as in taken less than a week prior to me first dose showed 7 NEW placks :o(
So I am MOST excited to see how they are doing now & will keep you posted!
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imacalus

Postby leetz » Thu Mar 31, 2011 8:47 pm

Many thank's...very much needed! I think we all are searching for that one thing that just might work....you have done a wonderful job filling us in and thank you for that! ;))

Many blessing 's your way!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Week 9 - aka as "passed the hot water test"!

Postby lmacalus » Sun Apr 03, 2011 10:22 pm

Haven't tried the hot bath yet but the hot showers are not only glorious but are not leaving me exhausted. How delightful!
And more importantly, I survived the 90 degree & 80+ days we recently had in San Diego. We went from haveing the heat on one day to the AC the next...yuk. Normally I'd push through & pay for it the next day. This time I was able to get the shopping & errands run in the heat and held up fine for the days following! Wow.
I'm still shying away from the heat - force of habit I suppose, but not having been bed-ridden for days or so later was a real treat.
I'll try the tub another day...
Blood work later this week to see how low my white counts are. I have noticed that blemishes, bruises and small scratches do not heal very quickly anymore & are requiring peroxide & neosporin.
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