Saturday, July 21, 2007

Feeling Out Of Sorts...

I'm not sure exactly where this post is going today, which is somewhat par for my course. I'm feeling out of sorts and having great difficulty identifying why.

Certainly I can identify MANY recent stressors in my life...from health to finances...but none seem quite overwhelming enough to cause me to lay awake at night fretting or worrying. I have had about 4 nights now of tossing and turning...finally last night, I simply drugged myself into a reasonable 7 hours of sleep. Of course, not without the added effect of a daytime "hang over" from benzodiazapines!


I know my recent near Novantrone debacle created an entirely new set of concerns for me as far as my healthcare delivery system goes...I am suffering from a lack of faith now. LOL And, on top of my need to now question EVERY LITTLE DETAIL where my health/MS is concerned, I have also realized I am only 3 doses away from using up my entire package deal of life time Novantrone...this IS a stressful thought.


I have been toying with ideas of "what next"? What is left for me on the tiny buffet table of MS treatments? "Not much", is the repeated answer that comes to me. I've done the Copaxone...didn't slow the MS down a bit. I did the Avonex...Interferons make me too sick. Which also rules out Betaseron and Rebif. I suppose I could try them, but at what risk? Do I really want to spend the majority of my waking days feeling SICK and/or FEVERISH? And my Avonex fevers were in the 100+ degree marks...as high as 102. That CAN'T be healthy or helpful.


Tysabri got ruled out FOR me...not because I wanted to stop taking it, but because Dr. She Who Will Not Be Named reported my "anaphylactoid reaction" to the TOUCH Nazi's and they allegedly cut off my supply. My most recent conversations with Dr. SWWNBN about the matter indicated there "might" be a possibility I could restart the Tysabri...but I'm not holding my breath on this one. I'm afraid my doctor and my body may have "$h!+ the bed" on this option, so to speak! LOL


I DID 5 rounds of IVIg...I still have no idea at all if this was helpful or not...Dr. SWWNBN tends to think it was NOT. The Rituxan Study I participated in was a flop...at least MY results were. I still do not know for sure if I received 2 doses of the drug. But regardless if I did or didn't, my MRI scans worsened drastically while IN this study. FTY720 has not even NEARED completion of its final testing, which means a few more years out for FDA approval...if it works.


This leaves me with the unpopular choices of monthly IV pulse Solumedrol, Cellcept, Cladribine, or Plasma Pleuresis (suggested by Dr. SWWNBN, which I have never heard of nor can I find any information about it?!). I simply do not like any of these choices.


But there IS that remaining choice of doing N-O-T-H-I-N-G. Just rolling my life's fuzzy dice and seeing where my numbers fall. The medical professional in me balks at this choice, too.


So, as you can imagine (or if you can't, give it a try! LOL), these thoughts are rolling around in the back of my head like waves on a stormy ocean. I am trying to remain calm, cool, and collected...but I find myself wandering down this most darkened lane of thoughts late at night! And, if I toss on other variable thoughts concerning my financial stability (I DO still have medical expenses in spite of my gold pass card Insurance!), employment issues/concerns, AND generalized physical "blah" from my recent Novantrone infusion...I am just NOT a barrel of laughs these days.


Oh yeah...AND I'm turning 43 next week. Woe is me...LOL...
(ALSO...PLEASE IGNORE THE COMMENT LEFT BY KNICKSGRL0917 IN THE COMMENT SECTION OF THIS POST. IT IS A SHAMELESS AD FOR SOME STUPID "TAKE A SURVEY" CRAP AND I DO NOT KNOW THIS PERSON)

15 comments:

Zee said...

Sorry you're feeling so out of sorts - can totally understand the frustration of having NO drugs that help or that you can tolerate. :(

What about low-dose naltrexone? Someone mentioned it as an option for MS in a blog comment somewhere - don't remember where I saw it - but it was intriguing to me.

knicksgrl0917 said...

hey! i'm going to cali this weekend and won't be back until september...here is the website i was talking about where i made extra summer cash. Later! the website is here

Miss Chris said...

Zee: I mentioned the LDN. You can take it with any other MS treatment...or all by itself, which is what I do. I have so many days free from any symptoms whatsoever. Fortunately, I am in a stage of the disease where I don't have too many bad days but I always say that it can't hurt to try it. There really is nothing to lose.
Hey Brain Cheese: I have a birthday in a couple weeks. I hope you have a happy one!

BRAINCHEESE said...

EVERYONE:

PLEASE IGNORE THE SHAMELESS AD POSTED BY KNICKSGRL0917. THIS IS THE PRICE ONE PAYS ON A BLOG TO ALLOW JUST ANY A-HOLE TO LEAVE A COMMENT.

LD

Merelyme said...

this certainly IS a lot to think about. most people do not have to think of such things on a daily basis. i have just begun the MS journey and i am already weary. i haven't even begun the medication phase of things. today i wish to practice selective amnesia where i consciously forget about my MS and just go have fun. probably won't work but i am foolish enough to try.

i feel for you...i hope you find something which works. there must be new drugs on the horizon. let's hope.

Adina said...

i am trying Rituxan now , having used all my other viable options.....have no idea what next ?? i am taking LDN already and have been for years now..Sorry , this somehow turned about me!!LOL!!!
What can i tell you sister ?? if life wouldn't suck so bad we would all fall off the face of the earth, right ????

Peej said...

concerning Plasma Pleuresis. I may be totally off base on this one but one of my neighbors used to discuss this from time to time. IF it's what I'm thinking of, it's the method of dividing the red blood cells from the blood plasma. I'm told it's a long process (takes a couple of hours per session) and is more like dialysis than it is like giving blood.

Not sure if this will help you at all but it's something you might want to research. Seems to me, that if it's the same process I'm thinking of, it might be working to remove the white blood cells. And isn't that why you're taking the Novantrone to start with?

Hugs!
Peej

BRAINCHEESE said...

ZEE:

Yep, that was Miss Chris...will have to check out that website.

BTW, how YOU doin' with that Copaxone???

LD

BRAINCHEESE said...

MISS CHRIS:

ANOTHER Leo??? Who knew there were so many of us roaming the jungle...LOL Happy early B-day to you!

LD

BRAINCHEESE said...

MERELYME:

Forgetting the MS can be a good thing...it sometimes helps me to push past some of the annoying physical crap and still enjoy the world! Keep us posted on your entry into the "medication world"...

LD

BRAINCHEESE said...

ADINA:

YOU'RE BACK!!!!!! I have missed your sassy comments and humor here. When did you start the Rituxan and how did you get it approved for your MS? Can you tell I'm nosey??? LOL

LD

BRAINCHEESE said...

PEEJ:

You may be exactly right...I have no clue, only that it sounds EXPENSIVE! Funny...I used to donate plasma when I was in nursing school for some extra cash. Wonder if I "infected" anyone with MS?!? LOL

LD

adina said...

Linda,
It's good to be back....:ve been traveling a bit with my partner and also my laptop fried....ehhh long and boring story.
Anywho, insurance denied me IVIG after more than a year of infusions so i pushed for Rituxan (with my doctor at my side , of course) and so far so good. i had my first infusion at Yale hospital and i have another one coming in 2 weeks. You said it made you worse and now i am worried...we'll see , what a heck , i am not going down without a good punch...LOL!!!

solipsist said...

I came across your site through a circuitous route - related to that knicksgirl spamming scum...

I have been dealing with MS for about 14 years. It started off very badly - I went blind over night, and yadayadayada.

I decided against any mainstream treatments, and went my own way. It has been "pretty good" in comparison to some others who are so afflicted, and I really hope to beat it eventually.

I researched natural anti-inflammatories, and settled on grape seed extract. It helps an awful lot - I can still function (work, drive, etc.). I also eat a lot of tumeric - which is another natural anti-inflamm.

I also take large doses (10,000 mg/day) of vitamin D - which seems to help further.

The medicos do not know what causes MS, and in my view, are flailing in the dark with chemical treatments that do not work. They are supported in their research by pharmaceutical companies - who just want to make billions from us.

What is that quote? Doctor, heal thyself...

Eat organic food. Drink large quantities of fresh carrot and beet juice (organic!). Avoid stress at all costs.

There is a lot more self-treatment that I do - too much to list here.

By they way, I have linked my MS affliction to an oral dose of polio vaccine.

Do not take any vaccines, as they stimulate the immune system - with drastic results. Vaccines are dangerous!

There is too much to cover here, but if you have any questions, you can e-mail me (through my profile).

For what it's worth, I have been receiving cranio-sacral massage lately, and it has triggered a "healing crisis" (MS attack), but at the same time, has been helping.

MS sucks, but I believe we can beat it through our own efforts. Good luck.

Anonymous said...

I googled feeling out of sorts and wound up on your web site. Now I feel worse because compared to your situation I really dont have a reason for feeling this way. I pray for you. Please be strong for people like me. Thanks. TSO