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

[lmacalus]

Sill feeling well.
The heat in the next 90 degree round did get to me... just left me a little fatigued and with an awful headache - so 2 alleve & a nice early bed time was in order and left me feeling FINE the next morning which was good b/c my husband was leaving on a biz trip so it was just me and the 4 yr old and well, the house, the dogs, etc - we did just fine.

Also went to the dentist last week - routine stuff but dentist gave me a large dose of antibiotic first so that it would be available in my system should any bugs from the cleaning etc enter my system...no complications.

The tests are all being rerun this week!
1) Eye MD - went yesterday. Had GREAT app. My vision has actually IMPROVED! Told the MD about what I was taking & how long & what I had been noticing with my vision being better with a reduced contact lense RX.
Asked him i it was possible that G was preventing the MS from attacking this nerve so it was healing?

He indicated the following
* he could not determine this as he is an Eye MD & not a neuro.
* both optic nerves presented as pink and healthy with the left only slightly paler than the right (previously the left was dramatically paler than the right and the right had started to show sings damage too)
* I was accurate in that my current RX was in 12 weeks time the WORNG Rx and I am now in new lenses wit the Rx that is weaker (just a few diopters but in both eyes)
* Still NO signs of macular edema which is what we were there to check for so I am cleared from the Ocular perspective to stay on G.

2) MRI - is TODAY! I had 7 new active lesions when I stared taking G so I am anxious to see what the new films show. As always I'll pop the CD in the computer when I get home but I am no radiologist so I'll have to hold out for my MD to call me with the details.

3) Dermatologist screening is all OK - unless I notice something new or changed I do not go back for a year

4) no need for a physical therapy evaluation at this time either as gait etc are all functioning normally w/o the need of assistive devices. So the canes are a bit dusty and the walker can STAY ON THE GARAGE WALL!!!

Will post more on MRI results and the blood work I still need to get completed soon!

Have a blessed week,
L

[leetz]

GRRRRRREEEEEEAAAAAAATTTTTTTTTT!!!! Thank's for the update!

[lmacalus]

my 3-month MRI was yesterday & was AWESOME ... 3 months ago (pre-G) 7 NEW lesions - 3 months later on G lesions are mostly smaller with a few that were "just" stable!!!!! This is my first GODD MRI ever and this was diagnosed 10 years ago next week! All praise to the Higher power for this incredible blessing


PS Wow an actual MRI that reflects how much better I've been feeling and the wonderful improvement in my vision, etc!

[leetz]

imacalus...

please do continue to tell God bless you!

[lmacalus]

so what really made this great MRI - was this is the first one in 10 yrs showing NO NEW ACTIVITY & NO ACTIVE LESIONS
Still taking my pill, gotta go for some blood work still - will do that this week.
Happy Easter to all - He is Risen!
L

[lyndacarol]

He is risen indeed!

[Algis]

Any further news lmacalus?

[lmacalus]

Wow that went fast & I am still feeling well for the most part. Braved a hot bath an well - it was DEVINE I came out clean & not exhausted - sweet! On the scary side however my boday's impaired immune system was very efficient at converting a torn nail/cuitcle into a rough case of cellulitis - all in 24 hrs - OUCH, quite painful & tip back to the GP who prescribed a high does of Kflex for 10 days - it's resolved in 5 but I need to finish to RX and per my MD... if it gets worst or you develop either red streaks or a fever go immediately to the hospital (yup that was scary) But it is resolved nicely, no more pain, swelling, etc. Lesson learned: be VERY careful with even the slightest cut, etc.
Next MRI in a month... looking forward to that too... will post the results when they are in.
Eye sight remains on-spot with the weaker RX, heat is not bothering me nearly as much and I am making nice progress with P.T. now - core is rebuilding, muscles are stabilizing & strengthening, no more gait issues, no nerve pain or restriction - able to stretch fully etc.
Bladder/bowel function back to normal, appetite normal, weight coming under control. Phew, if this keeps up I may have to start cleaning my own house again (LOL)!

[lmacalus]

Since deciding to start Gilenya.... reliance on & use of pulse/emergency steroids have been GREATLY reduced for me...
Previously - 2-5 IVs per month (2-5 grams total)
Decision to start = 2 months no steroids
5 months on Gilenya = 1 single gram (1 day in 5 months)
For a whopping total of 1 dose/gram over the past 7 month now!!!!

Had I continued w/o G I would have had a minimum (assuming on 2 days/month) of 14 grams of solumedrol....
Instead with Gilenya I required 1 gram

check my math but I believe that's 93% reduction on steroids!!!!!!!!!!!!!!!!
(I believe I may actually make it through this lifetime with my original hips

Blessings, Laura

[Algis]

Thanks Laura; glad you do so well

[lmacalus]

Still on G, YEARS later. For the past 5 years, I have enjoyed beating the expectation of the reduction in relapses and quite frankly being steroid-free for the last 4. Recent documentation on the risk of PML led to a JC Virus test in November. Results re positive so I am at risk. Both my husband and Neurologist feel the risk is low though I am thinking HARD on this one. The alternative ALL seem to come with the same risk profile.
Considering 1) Stay the course on G or possibly (?) Lemtrada.
Thought? Answers?