Tysabri infusion # 3 in da books -

 

I have been having the last 3 infusion with the same 3 people, an older lady and and 2 men that both came in with care givers and wheel chairs. For some reason i thought these men were getting chemo or something or something like that... No they are on the same drug that I am on. It was a very humbling afternoon. I left very thankful that I was as well off as i am and that all my shit works as well as it do etc etc.  The reactions that i have are small compared to what I saw today. The migraines that i have following the infusions are livable ( i mean i really hate that that make me throw up but hey whatever) i can move on my own freewill and not confined to a wheelchair.

On other news has anyone ever used GABA with any luck in children? I'm having behavior issues with my 5 year old. I got some at the health store yesterday but even my research i have to many unanswered questions and would like some first had experiences.This article has a lot of great information for use in kids. I willing to try anything at with point, I can't have her kicked out of yet another daycare with other even starting kindergarten yet. It's suppose to have some amazing effects of children with ADHD and other hyper active issues. Fingers crossed. I give her a small dose of melatonin at night and i wonder if some of her issues might be hormone related, however, her doctor doesn't seem to believe so.  I do know that one of the latest out bursts at school came after I tried this dyed pasta dinner

Awesome Awesome idea - Horrible horrible child the next day .... she never calmed down, it was like a 5 year with a serious case of pms. Crying, argumentative and just plain terrible. I have to wonder if the food coloring had something to do with it. It started with in an hour of her eating dinner and lasted thru the next day.

Nuvigil.....

Omg- I itch! I have been popping Benadryl like candy. Hives are slowly starting to disappear.

It would be my luck that I would turn in to the itching inferno with the one medication that my neuro gave me that ACTUALLY made me feel human again and fuction normally.

‪#‎screwyouMS‬

Nuvigil ?

Any one anyone? Will I ever sleep again?

Less then favorable neuro appointment yesterday - got my MRI results from June. too many new lesion for comfort. They were comparing to a MRI from 2010. Just having a hard time figuring out where they all came from ... Pity party for one.

Tysbri infusion number #3 next Friday ....


vague post is vague :)

2nd Tsbrabi infusion t- 6 days

my second tysabri infusion is Friday. My eyes have started to hurt again ( and my again , i mean it started this morning, they hurt big time before the first one last month)

Stresses are so high here, that I feel that if i even mention that something is wrong that I will be "one upped" with someone elses problem - so the easiest thing to do is keep my month shut and carry on.

I see the neuro again the beginning of August. The 900 mg of Gabapentin doesn't seem to work everyday. Some days it seems to be plenty, other days I feel it wear off and I wish I had stronger dose.  Anyone else have experience with that?

The day after #1.....

I have to admit I felt better yesterday then i felt in days .... which isn't saying much after how terrible I had been feeling later.  But my eyes stopped hurting and that was my huge complaint... but who knows why that happened. Today (Sunday I woke up at 3 and couldnt fall back asleep and now I'm exhausted and my head is starting to hurt and my that annoying pressure is start to build behind my left eye) but the wonder-tot will be up any time and we are making a "mother lovin" cake today.....


My Other half and I fought all yesterday, after steroids my hair tends to fall out, i went and cut my hair shorter and we had talked to him about it. he knew it was coming. i only cut off around 2 inches ... really not much. but holy cow. Did it ever cause a fight. he threw a hissy fight, left for about an hour,  came home took us out to dinner and then went to bed... MEN!!!!!!

Tysabri infusion #1

Infusion #1 was today.... Came home and went to bed. Didn't know if I should pass out or throw up. My mom looked at me and told me that color didn't look good on me. Well that color didnt feel too good.
Oh well free pass for not having to chase the 5 year old around and not having to cook dinner. I'll take it where I can right?

JC Negative   

WOOT WOOT !!

gaba-midal and stuff like that .....

UGGGGG- haven't gotten my first infusion schuduled gue to the first time cordanatorer never calling me back. I hacced her wednesday morning, she said I'll call this afternoon, never did.  Wash rinse and repete for thursday and then she was off on Friday. UGGGGG


My New doc started me on heavy oral steroids and they are making me super pissy ( my family loves me now) and they upset my stomach a lot. and Gabapentin (which might be the tummy culprit) Justin calls that Gaba-midal for some reason...

vague results, dumb insurance, trips that seem to never end

Had my my crazy 2.5 hour MRI last Thursday. Oh why did it that long? because it was at 6pm after  i had worked a 10hr day and I keep yawning and headmaster kept yelling at me and having to redoing the test.  She keep saying " you knew that you had an MRI tonight you should of taken a nap" umm i got off work and came straight here? To the clinic that has hour special hours for the people that need hours AFTER WORK ugh ... sorry i yawned... and sorry to the person that have his MRI after me.

That MRI showed worsening, Thats all i know. Off to finish the vacation with the in laws

mri got moved...

New neuro called with his panties in a wad today when he found out that inland imaging scheduled the mri for the 15th ... its now tomorrow night. I had no idea that they did mri's at 6:30pm on Thursday nights.

Tysabri - The start

Yesterday I met with a new neuro at the Spokane MS clinic. I went armed with information. The last neuro, I saw didn't want to do a MRI or anything and I saw him for over 2 year and felt when I first saw him that i was coming out of a active relapse. Asshat. This new doctor spent alot of time with me going over all my issues and believed me when I said I thought I was relapsing again. (didn't help that he brought me to tears when he poked my feet with a toothpick.) We came to a joint conclusion that Tysabri would be a the best choice for me. Avonex and it's dumb interferon hated me (ie got me knocked up) and I  relapsed more then i should on copaxone.

MRI is schuduled for the 15th , then a 3 day dose of  IV steroids with a 10 day taper after that. Hopefully after that the insurance mess will be worked out and bam everything will fall into place.

In other life news my sweet girl turns 5 tomorrow. This was her in April at the MS walk.