Results are in and the Doc has spoken....

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby jimmylegs » Mon Mar 02, 2009 6:20 pm

oh i was going to make a joke there about why we can't see or feel or touch it but i understand it doesn't feel like time for wisecracks for you right now bubba...

cure and sou thanks for the tips. i will crack the seal on that lecithin bottle tomorrow. although i do eat plenty of eggs. funny, that protocol with the bcomplex and vit e and lecithin also recommended a high protein diet with 2-3 eggs for brekkies daily. go lecithin!

cure i'm sure i've already bored you with this but, ever had your zinc tested?

i made an appointment with my doc today, to get some bloodwork requisitions. have to wait til april. i'm going to ask for zinc again. the reason i ask is because i suspect zinc deficiency screws up your body's ability to produce uric acid, and i am hoping i'm not crazy and that since i supplement zinc now, and never did get my hands on any inosine, that i might be boosted out of that annoying ms average/relapse range. 194 can bite me, i never want to see it again!! lecithin is more than welcome, if it wants to get on board with helping me keep the uric acid in line.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby patientx » Mon Mar 02, 2009 6:26 pm

He said definately MS. Wants to start me on copaxone. HOWEVER, the pharmacist said that it costs about $85,000.00 a month and insurance says noway! Now what? Sad
Any alternatives?
Doc said my MS is at about a "2" on a scale of 1-10


I'm guessing the 85k number is an exaggeration (though not by much) :)

I'm on Copaxone as part of a trial looking at a combination of Copaxone and Avonex. The administering of the medicine is easy. Yeah, it's a daily injection, but you get used to it (granted I've only been doing it for 6 months, and haven't had any significant reactions). To be honest, though, if I had to pick a medicine again, I might try Rebif. Yes, side effects are more pronounced (flu-like symptoms). But I think the studies for Copaxone's effectiveness were a little forced.

On another note, aren't these neurologists amazing? They're supposed to be the experts and they ask us to pick a medicine (my experience sounds similar to yours). Now you could argue that general neurologists can't be expected to be experts in MS. But when I went to an MS specialist for a second opinion, I got the same response; pick one of the 4 medicines.
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Postby jimmylegs » Mon Mar 02, 2009 6:34 pm

i got, hmm you don't have any money? perhaps we can get you into the rebif study... here's an application for government funding.
somewhere, i still have that little tote bag they send you with all the rebif information pamphlets, so you're prepared for the nurse visit and injection training.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby Bubba » Mon Mar 02, 2009 6:50 pm

jimmylegs wrote: so you're prepared for the nurse visit and injection training.


Not quite yet. I was ready three hours ago, but have since changed my mind. I am VERY uneducated about thiswhole ordeal, not to mention the meds. I think I am going to do a little background and research first before I choose what to do. Heck I dont even know if I need to take meds???? I feel great!
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Postby jimmylegs » Mon Mar 02, 2009 6:53 pm

don't worry i didn't mean "you" personally with that. more "one".
but yea, research to your heart's content - i did, no meds. other ppl research and choose a med. maybe i will choose one, one day.
anyway you slice it though, reading is power! go for it bubba.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby chrishasms » Mon Mar 02, 2009 8:59 pm

YOU NEED TO BE ON SOMETHING AND MOST DOCS WILL SAY EARLY ON IT IS COPAXONE!! If you had diabetes you would take a shot.

Look I was you and then one day I walk like I do now, a gimp. Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please

don't wait to be me. Get on something. Do something. Don't wait until something bad happens.
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Postby cheerleader » Mon Mar 02, 2009 9:10 pm

sou wrote:Hi.
Lecithin comes from the ancient greek word "λέκιθος" (pronounced lekithos) which means "the egg yolk".
It is contained in egg yolks (surprise!) and soya beans.
sou


Thanks for that, sou! My hubby craves eggs, and I serve them with salsa, or with fresh veggies, mushrooms, low fat cheese and lots of spices. He also craves edamame (soy pods) Now I know why! Makin' new myelin.
Bubba...I'm going to ask, as long as you're reading, that you check out some of the low fat diets like Swank and Best Bet. It will help your blood pressure, your heart and your MS, too. I know you kicked tobacco...you can do it!!!! And you'll feel even better.
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Mon Mar 02, 2009 9:13 pm

My doc said for me to pick from the 4 drugs but he also explained each drug what it did, it's side effects and the results of clinical trials for each drug. I chose Rebif after much research in the months previous to confirmed dx.

I hate Rebif somedays (today being one of them). I am going back to my doc on the 8th and I am going to talk to him about other options. I can take the shots but the side effects suck.

Take your time making this choice.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby Bubba » Tue Mar 03, 2009 9:34 am

chrishasms wrote:YOU NEED TO BE ON SOMETHING AND MOST DOCS WILL SAY EARLY ON IT IS COPAXONE!! If you had diabetes you would take a shot.

Look I was you and then one day I walk like I do now, a gimp. Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please Please

don't wait to be me. Get on something. Do something. Don't wait until something bad happens.


I suppose what I was kind of thinking is.... That the MS would give me a small, tiny, little, itty bitty sign that it was progressing and say to me, "This aint a fantasy, you need to go ahead and get on some meds".
But I see your point. It just seems as though the side effects ruin (for lack of better words) your daily life. I never pay any attention to the side effects of drugs, cause they never bother me. But apparently these drugs side effects mean what they say.
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Postby Bubba » Tue Mar 03, 2009 9:45 am

[quote="cheerleader Bubba...I'm going to ask, as long as you're reading, that you check out some of the low fat diets like Swank and Best Bet. It will help your blood pressure, your heart and your MS, too. I know you kicked tobacco...you can do it!!!! And you'll feel even better.
AC[/quote]


I was actually considering Nutrisystem,because I HAVE to drop some lb's. What worked for me before was the locarb diet. I did some reading last night on here (the net) and it listed the Atkins Diet as a good diet for MS. Now that being said, I am actually on a 6 month break from atkin right now. I dropped 115 lb's on it already and my cholesterol came down as well. I am currently 6'2" and 290lbs. I want to be at about 220. I have to run a physical fitness course for time every year to be able to keep my job, and I could bearly do it at 375. I am fat but I train in the gym and am very phyisical so even at 375 people would say "no way, you dont look that big". Long story short.... I need to choose the right diet, exersise, and meds to maintain my job. I have seven years left before I can retire. Thats what is scarring the hell out of me!!!!!!!!!!!!
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Postby patientx » Tue Mar 03, 2009 10:08 am

Bubba,

In the end, it's your call on whether to go on medication. I can certainly understand peoples' reasons for not going on the meds. Taking some time to mull things over is a good idea.

But one thing to consider. If you've been diagnosed, your MS has already given you a sign. The next one may or may not be tiny; no one can predict. The side effects interfering with everyday life is a legitimate concern. I can tell you from my experience that the side effects from Copaxone are minor injection site reactions, nothing that interferes with me getting things done (but I'm in no way trying to sell you on Cop).

You are wise to take some time to consider. Do as much research as you can, go back and read some of the original studies. If I could go back, I would discuss these studies with my neurologist; if you're current neuro is willing to do this, find one that will. All I got was the standard line, that all the DMDs are equal in effectivity, just pick one. For what these guys make, they should have a little more information than that.
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Postby cheerleader » Tue Mar 03, 2009 11:40 am

Hey Bubba-
My hubby did Atkins for a few years before his MS diagnosis. I know locarb diets can work, but they're not really balanced or good for MS. Jeff's now eating really good carbs like fresh fruits and veggies and beans, but staying away from sugar, white flour, cakes, cookies, etc, which are bad carbs. He's keeping his weight off with exercise, too. It's alot of work (as we all know!) but it's worth it to keep moving.

Nature-made carbs are good for us, and we're created to eat them....they just have to be good ones with lots of vitamins and nutrients. It's really about eating good, whole natural foods as opposed to processed stuff.

Keep reading and looking into the connections...you're off to a great start-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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