I'm sooooo confused

I have researched and researched MS on the internet.  I think I've read every site there is as well as more blogs than I ever thought existed.  The only consistent thing I find is that there is currently no 'available cure'.  Even as far as what kind of disease it is there seems to be arguments.  Is it an auto-immune disease or is it inflammatory?  Maybe it's related to a vascular issue....who knows?  Really it's irrelevant for me right now as even if there is a cure, it's not something I can access.  I just want to figure out the 'right' way to minimize and delay this.

This is where the real confusion begins.  I have bought and read the MS Diet by Dr. Swank.  It basically had me eliminate dairy and saturated fats.  Which was actually a shocking amount of foods.  Overall, this lifestyle change would probably be healthy for anyone.  A naturopath I saw put me on an elimination diet which basically ended up in eliminating everything but rice at which point she triumphantly announced "that's it, you're allergic to rice!).  Nice, no more money for you lady!  I'm starving!!!!!

Other people have suggested the paleo diet for those with MS.  Similar to the Swank diet, slightly less restricting...much more expensive....lot's of organic/grass fed products.  Overall, one consistency is saturated fats in high quantities...primarily vegetable oils.  Okay, done.

I get that diet is linked, the reality is however, that I just don't have the willpower to give up everything I enjoy.  I like steak sometimes, I don't like paying $25 dollars for a teeny tiny one because it's grass fed.  Once in a blue moon I feel like yogurt....not soy based (I tried it, it's gross).  To top it off my favourite food in the entire whole wide world is Chicken parmigiana.  Where do I start, bread crumbs/oil/mozzarella cheese.....delicious....not okay on any of the above mentioned plans.

Next problem.  DMDs (disease modifying drugs).  My neuro was pretty damn insistent that I start these.  He felt it was absolutely necessary at this point.  My naturopath (at the time) felt the exact opposite - then again, my only problem was a rice allergy.  Doctors apparently get a kick back for getting new patients to start these drugs from the companies that produce them so they have a great incentive to recommend them.  People say they are loaded with carcinogens and lots of stuff that will make you even sicker over time.  The drug companies say they will reduce your relapses by up to 33%.  To me it's kind of like an anti-aging cream.  You use it faithfully your whole life to help you not look so old.  You have absolutely no way of knowing what you would have looked like if you hadn't used it, so you are left to just keep forking out loads of money in good faith that they are doing something.  How many relapses would I have had if I wasn't injecting daily????? Who knows for sure.

Exercise.  People with MS should exercise regularly.  They should not exercise to the point of exhaustion, over heating or push limits as this could trigger a pseudo-exasperation or worse, trigger a true relapse.  I used to weight train.  The only thing I know is to push my limits, sweat like a dog, yell, curse and be sick from it all at the end.  That was exercise and it was awesome!!!  I did a yoga workout a few weeks ago thinking that would be okay.  I guess I shouldn't have done the intermediate/advanced because I sweat a little and sure as shit started a full out relapse a few days later.  I'm not sure if they were related or coincidence so now I'm petrified to try again.  The only thing left is stretching.  BORING.

Ughhhh.  I know I sound super negative here.  I know that I have dissected every single good idea I've come across.  It just seems though that for every good idea there is another study or person explaining why it's a load of crap.

As I said....soooooo confused.

Hey you!!

Hi there, yeah you, the one reading this entry.  I know that over 250 people have popped in and glanced at one or two things I've posted.  Probably 90% of you ended up here completely by accident and hit the big old back button on your browser immediately.  I do, however, think that at least a couple of people actually read through it.

So this is for those people.  I am asking you to leave a comment.  If you have anything to share at all that you think might help even the slightest, I'm all ears.  I'm still looking for recipe ideas, thoughts on copaxone, advice about exercise and even a little advice on what to do when I'm feeling really down and alone with all of this, which I am right now.

Just knowing someone, somewhere, gets it...well, that would be great to hear.

Thank for taking the time, it means more than you know,
Talk soon

Is copaxone making me worse?

I know that it can take 6 months or more for your body to begin to respond to Copaxone.  I know that it isn't going to make me better and that the best case scenario is that it will reduce my relapses by 33%.  What I didn't expect though, was to get worse.

I started injecting daily at the beginning of March.  I had a relapse in April and am now deep into yet another one.  When I started not feeling well 2 years ago I would be "off" for a couple of weeks and then almost normal for maybe 3 months.  My doctor said I was having more relapses than average.  He said I needed to start a DMD right away.  What I don't completely understand is what this means.  I went into a pretty bad relapse in February, started Copaxone, and then had 2 more only 5 weeks apart.  It seems like since this all started I'm just getting worse and worse and since starting the drugs they are barely separated by the mandatory month in between.

What does it mean if my relapses are coming more and more often.  They seem to include a new symptom with each one too, which is also very frightening.  I read that it is normal, on average, to have 1 relapse per year,  at this rate I could have about 9 this year alone.  Does this mean I am going to get worse quickly?  Does this mean I will probably lose more mobility sooner than average?  Does this mean I will transition to secondary anytime? 

I look for answers to this but they are vague.  What I have read is that every disease course is different for everyone so there's no clear way to know.  I have seen studies that show that the more relapses you have in the first 2 years after diagnosis the sooner you will have more advanced disability but then it always follows with 'this is not the case for everyone'.

I want another MRI, the last one on my brain was last August.  At that point it showed one new lesion since 6 months before that (I have over 14 total).  I had a spinal MRI in November which showed a couple of lesions there as well.  With having had 5 relapses since last August I wonder how many new lesions are there?  Apparently you can develop lesions even without a marked attack so it could be a lot.  Would this add to atrophy?  He already said that was measurable in me and was another reason to start DMD sooner than later.

As I type this I see that I already know half the answers here.  I know it's not great news that I'm having so many relapses.  I know that I won't know how this is going to progress until it actually happens.  What I don't know is if starting these drugs has actually triggered something that is making things even worse?  Does anyone know if this is possible?  I would really appreciate any comments or feedback from people who are taking or have taken Copaxone on this one.

Talk soon

Clearing customs just got a lot more interesting

This week was my first business trip with my new travel companion...Copaxone.  Bringing these syringes with you on a plane requires some pre-work.  First, you need a letter from your doctor stating you must travel with this drug, second, you need a prescription label from the pharmacy, third, you need to have the card on the travel case also signed by your doctor and filled out with pharmacy info.  If you have all of this, things will be a breeze right? Wrong.

Flying out of Canada into the states went seamlessly.  I presented the medication, explained why I had it, let them inspect it, provided the letter, went through the metal detector and moved on to my gate.  Flying out of the states back to Canada was a whole different ball game.

First, you have to stand in a completely separate line.  The one that's marked for families, liquids, wheelchairs and medications.  My co-workers do not know yet that I have MS nor do I want to share it, so this required some interesting excuses and downright avoidance as I separated from the pack.  Then, I wait in the longest line ever.  I wait, and wait, and wait.  I start getting the BBM's.  "where are you?", "have you been arrested? :p", "LMAO, what the hell are you doing?".  I let them know they are hilarious and they could go ahead to our gate, already creating the excuses (lies) I would feel the need to make up for the line, delay, etc.

My turn.  I take off my shoes, take off my sweater, take out my laptop, phones, meds.  Place everything in the bins minus the copaxone (it's not supposed to go through the x-ray apparently).  I hand the copaxone to the customs officer.  Let the fun begin!  I get to go through the super cool body scanner first, I pass.  Then I wait while they analyze the one syringe I have left.  They put it in something that literally makes a rooster sound.  I'm not kidding.  Apparently this means I AM OFFICIALLY A THREAT TO HOMELAND SECURITY!  Now I am important enough for 3 customs officials.  The one tells me my medication has 'alarmed' and they will need to check everything. 

This is when I see my worst nightmare.  One co-worker, who thought he was being the only nice one, waiting for me 20 feet away, watching everything.  CRAP!!!!

They take me to the side.  I have a choice, I can be patted down here or taken to a separate room.  "Let's just do this", I say, I am NOT having this guy wondering what's happening as I'm escorted away.  I am groped and patted almost everywhere by a female officer while standing, get this, "arms out like an airplane".  This is for sure a new pic on my co-workers I-phone.  My laptop is swabbed, my phones are swabbed and my shoes are swabbed.  Then I am swabbed.  "Clear, clear, clear, clear".  They finally give me my shoes back, thank God, because I was barefoot on an airport floor, ewwww.  Then I have to re-pack everything I had strategically originally packed in my carry on, which was more than it could handle in the first place.  This, by the way, is a lot harder then you think when your hands are shaking uncontrollably and your brain has temporarily frozen. 

When all was said and done, they thought that would be the appropriate time to ask why I need this medication.  I answered "because I have MS".  Hearing myself say those words, going through the embarrassment of this screening and realizing that I was eventually going to have to tell someone at work, was a burning reminder that this is true.  This is my life now.  Not one day seems to go by anymore that I don't have to accept that everything....everything has changed.  Everything, has gotten harder.