Two forms of MS?

There has been a study done at Stanford University School of Medicine that may have discovered that there are actually two forms of MS.  What is critical about this study is it found that each form reacts differently to treatment from beta-interferon.

I took beta-interferon injections for over 18 months.  It was uncomfortable at best and downright nasty at its worst.  Flu-like symptoms and fever were often experienced and increases in my MS fatigue levels also.  These side effects were the main reason I quit taking the drug.

What concerned me most about quitting the drug is that “how I feel” daily is not the measure of the efficacy of the drug.  Progression of my MS is the true measuring stick. Was my disability increasing?  Was my baseline getting worse?  Was I having exacerbations?  Was my myelin being attacted?  Was I getting more active lesions in my brain or on my spinal cord? At the time I quit, these questions were largely unanswered (at least in my mind).  All I knew is my daily life was not what I wanted it to be, so I quit Rebif (my form of beta-interferon) to see what life without the drug was like.

Since quitting Rebif I feel better.  Better means no more fevers, no more flu-like symptoms, no more injections.  I still have MS and it still kicks my butt from time-to-time, but I don’t have the side effects of the drug to deal with in addition.  I do have added worries about if stopping the drug, my MS will start to progress faster.  Only time will tell.

The study basically found that one form of MS reacts positively to beta-interferon treatment and the other does not.  In fact the MS type that does not react well to beta-interferon might actually progress faster while on the drug.

As a result of the study, they may be able to develop a blood test to determine if beta-interferon treatment will help you or not.  That would be a big improvement. At the time I was diagnosed, they simply said you should take one of the Disease Modifying Drugs to slow MS’s progress.  Please choose. That’s it.  That is what they told me.  Just being diagnosed with a disease I was in no state of mind to make a good and well informed decision on what drug to treat it with.  At least with a blood test they could have been more certain that it would actually help me.

The data generally puts beta-interferon’s efficacy at about 30%.  But this is based on giving beta-interferon to just about any MS patient.  I have to believe that if they do develop a blood test to pre-determine if you are likely to be helped by beta-interferon the efficacy will go up considerably.

It is a MUCH easier decision to take a drug like a beta-interferon if you know (better than 30%) that it is helping you.  I might still be taking it or start taking it again if I knew it was really slowing my MS.  For now, I will wait.

Hey MS’rs. Can you exercise?

I seem to be getting better and better every day.  If the weather would cooperate it would be perfect.  The only days that are bad are days where snow or rain or whatever you want to call it moves in.  As the pressure drops, so does my health.

Rebif was making me feel worse on the three injection days, but that is a thing of the past.  Those days are gone now and I am not looking back.  I will not being taking any more MS drugs unless it is something like LDN or something that shows it doesn’t have major side effects.

I am a HUGE believer in an adrenaline kicking workout every day to keep the MS fatigue issues away.  In fact, I have committed almost 2 hours (including travel time) a day to this end.  I firmly believe the endorphins from a good workout cause the fatigue to be far less effective and not take hold of me until almost bedtime.  It seems to really work for me.

How about it, other MS’rs?  Can you exercise?  If so, do you?  I remember after I was diagnosed, I would read about how exercise would increase my body’s core temp and I would start to have MS symptoms. It put a scare in me.  And they were right, I did experience an increase in symptoms as I exercised, but you know what?  If you find a way to work through it, do it.  That is what I did.  I used to have legs go numb, or tingling in my feet, spinal seizures, or hot feet, or any number of scary MS symptoms as I exercised.  But as I pushed through it or switched to a different machine (from elliptical to bike) they would go away or they would just disappear after my workout was over.

I will be the first to admit my MS symptoms are not as bad as some, but I had some leg drop problems, falling on stairs problems, leg weakness problems, spinal seizures after exercise, but now they are not nearly as much an issue.  I was able to effect them by working out despite what MS was trying to do to me.  Maybe my exacerbation subsided.  But maybe, just  maybe the exercise helped it go away.  Now I can exercise mostly without the scary MS symptoms.   I still have tripping issues when I run or spasticity issues in my legs if I push too hard, but for the most part I have improved greatly with time.  I believe I have exercise to thank for that.

I am looking at taking on other physical challenges as the year goes by.  I plan on doing the Minnesota Ironman (100 miles in one day) Bike Event in April of this year.  I plan on doing the MS 150, MS Tram (300 mile), and the MS 30 bike events.  Maybe I will try to do a run also.  My body is slowly getting to the point where I can run for extended periods of time.  I occasionally have some tripping problems or spasticity issues but it is getting better every day.  MS does not rule my body, I do.

Not missing Rebif…

Rebif is an easy target.  It is a medicine for MS that is supposed to slow the progress of your MS down.  Do you EVER know if it is working? Nope.  You just have to have faith that it is the right decision.  You see, Rebif does not make you feel better.  It actually made me feel worse.   But it is not supposed to make you feel better.  It is only injected to slow the progress of MS down.  To prevent future exacerbations or bouts.  Can you still get bouts while on the Rebif.  Yes.  Is there any way to tell if the medicine is working and actually preventing bouts while you were taking it? No again.

There is only data that shows 30% of the people taking Rebif have fewer bouts with more time in between bouts.  Getting bouts are bad (duh!!).  Every bout you have with MS can increase disability and affect your baseline.  So taking Rebif means there is a 30% chance that I will walk longer. That I will see longer.  That I will live without disability longer.  But choosing to take Rebif to affect your MS does not come without a cost.  I know.  I took it for 16 months.  It did make me feel worse.  It did affect my quality of life.

Now that I am living without Rebif I have noticed some things:

I do not feel as much better as I thought I would. This was a big disappointment.  I still have the fatigue, I still have brain fog, I still have numbness and tingling.  I still feel awful when bad weather moves in.  I really don’t know why I thought this would go away.  Maybe it was just that I have not lived without the Rebif since my first major bout.  So in a way I thought I would go back to the way it was BEFORE my first major bout.  It was a stupid assumption, but again it probably was just wishful thinking.  My baseline is the way I feel now.  Rebif only added some fever and flu like symptoms for approx four hours on shot days (three times a week).

My workouts have become easier. This is a weird one.   I was able to kick the intensity up a notch as the Rebif left my body.  I have gained 5 lbs of muscle since quitting the Rebif.  I can only assume that the Rebif just slowed my body down a bit.  It caused my body to be constantly battling something, maybe even itself.

I still get fever and flu-like symptoms when my MS symptoms appear. In much the same way I felt shortly after my Rebif injections, I still seem to get a fever when my MS symptoms are present.  I have no explanation for this at all.  Maybe the Rebif is still in my body and affects me only when my body is worn down and battling MS symptoms.  Not sure.

In my mind, before quitting Rebif, I was convinced that Rebif was why I felt like crap all the time.  You see, before May 2008 I did not have fatigue or constant tingling.  I did not have brain fog or rubber legs.  I did not have constant bladder and bowel issues.  I did not have “the Hug” either.  But shortly after May 2008 I started Rebif to counter the long term affects of MS, and the things I listed are always there.  Maybe at reduced intensity most of the time, but they are always there.  So I think I convinced myself toward the end of my Rebif era that Rebif was the cause.  Now I know.  Rebif had nothing to do with the way the symptoms of MS affect me.

Now if I ever get another exacerbation, I will always wonder if I was still taking the Rebif, would it have prevented it.  But for now, I don’t miss it a bit.

Rebif retreating…

I feel tingling all over my body today.  Just the fifth day into quitting my Rebif and my body seems to be coming alive.  Maybe this is a good thing, maybe it is a bad thing.  I used to have this bad habit of rubbing my hands together all the time.  Well, I am doing it again.  I do it because my hands tingle so bad they are painful and rubbing helps suppress some of that harsh tingling.

My workouts have been noticeably different this week.  Today, my left leg went numb and my left foot tingled much more than normal as I did the stairmaster today.  I pushed through the feeling though and finished my workout despite the weirdness.  I had much more of these types of strange feelings throughout my workouts over a year and a half ago (when I just was starting the Rebif).  So it stands to reason to me that the Rebif helped slow my immune system or nervous system down to help limit some of these feelings.

Is this what Rebif is supposed to do?  I am not sure.  Rebif has been proven to slow the progress of MS down in 30% of its patients,  and it does this by reducing the immune response that can attack nerve cells in your body.

Those that I talk to about this move (to quit Rebif) are in two distinct and very far apart camps.  One side is the big pharmacy conspiracy side.  Doctors, nurses, and big pharmacy are all evil doers and all they care about are profits and they care nothing about the patient.  The other side is… well the opposite.  They believe that the medication is necessary to slow MS down and that by not taking it I am playing Russian Roulette with my health.  I actually believe the truth is somewhere in the middle.

WARNING!!!
MY OPINION AHEAD!!!

I do believe that the big Pharmacy companies like profits.  All companies like and need profits.  Do I believe they want to keep me sick so that they can make these profits?  No,  I do not believe that.  It does not help their end or even their bottom line.  If another drug company develops the next great thing in the treatment of MS, they stand to make the profits while the companies supposedly laughing and rubbing their hands together while I remain sick will then be left out in the cold.  I believe in the free market and capitalism.   If the government and corruption of power were not involved it would work much better and faster.  That is where I think the system breaks down.  The FDA and the thirst for power slow progress on all fronts for making sick people better faster…

Bottom line is we are all responsible for our own health.  The doctor, nurse, govenrment or the big pharmacy companies are not responsible for our well being.  The best thing to do is to stay as informed about our own health as we can so we can make the best decisions possible regarding our own well being.

I take ownership of the decision I made to take Rebif in the first place.  Maybe it worked, maybe it didn’t but it was my own decision.  So is the decision to quit the Rebif.  I will accept the happens and can blame no one but myself if I don’t like the results.  There is some comfort in that.

Off Rebif…

I quit Rebif.  My last injection was Friday of last week.

It made me feel like crap all the time.  At least that is what I think.  I am going it without prescriptions for a while.  We will see what happens.  My doctor does not know I quit yet, but I warned the nurse that this was probably going to be my decision.  She was concerned, but supportive.

I was tired of the fevers and flu-like feelings and all the MS symptoms that happen more often on injection days.  I will be happy to be rid of them.  Worst case scenario is I suddenly have an exacerbation. If that unfortunate thing happens, I may rethink my decision, but I have faith that this is the key that will make me start to feel better.

If I was doing nothing to combat this disease I would probably stay on the medication.  But, I am aggressively exercising and staying very active.  This alone will help a great deal.  I will know very quickly if things in my body deteriorate because I am now very much in tune to what is happening in my body.  My workouts give me a very accurate and measurable yardstick to how my body is battling this disease.

I watch my strength by weight training each side of my body individually.  I watch my endurance by doing a rigorous interval cardio workout every Monday, Wednesday and Friday.   I do some stretching before and after my workouts (probably not enough, patience-patience-patience) to help with spasticity.  This has all helped me to be in better shape then I have been in 20 years.

But every Monday, Wednesday and Friday right about 2pm I get sick.  It has been so much worse lately.  Some days I can not even function when the fever hits.  Yet I am still trying to do so much with my kids, the house, friends, pool, and everything.  I drive everywhere, work 10-12 hour days, still do my workouts every day and continue to get up at 4:30am to start every day.  Natalia (my girlfriend) is frustrated with how much I try to get done every day.  She says I am not like a sick person.  Well… I don’t want to be like a sick person.  I don’t like something limiting what I want to accomplish.  It presents me with a challenge and I am usually up for it.

So to win this latest battle for my life I have decided to quit the Rebif.  If the fever goes away without the MS symptoms bothering me, I can handle just about anything life could throw at me.

Been a while…

It has been quite some time since I last posted.  Has my life been any less active.  No.  Has MS taken a back seat in my life right now.  No again.

In fact, I feel like I am battling more now with my MS then I have since early on after diagnosis.  I have complained to my doctor about how I feel, complained to those I love about how I feel and even complained to some total strangers about how MS makes me feel.

My Rebif injections are beating me up right now.  I feel awful on the days I take the shots.  I am struggling with why that is.  I went through a very good period where I did not feel anything from the injections.  I did not get sick and could barely tell I was injecting myself with the sweet nectar of the gods that is Rebif.  I have not had any exacerbations while on Rebif, but there is some question about 3 new lesions and two black holes in my last doctor’s appointment.  His take was to wait and see after the next MRI. Easy for him to say.

Why are my injections affecting me so bad right now?  Maybe my stress level is higher and that is causing my MS to flair its symptoms.  This seems to be the most likely culprit.  There isn’t anything different in my life right now besides more stress (mostly job and financially related).

It is the start of a new year.  That means I have to pay the first $3400 of my medical to satisfy our high deductible health plan.  I am seriously considering quiting Rebif as a result of this.  I can not afford to pay the $2,300 price tag for the January injections.   They are seeing if they can give me financial assistance to spread the cost of the Rebif over several months or the whole year, but I don’t think I will qualify.

When I talked with the MS nurse, she strongly cautioned me about quiting the Rebif.  She commented that they treat hundreds of patients and it is VERY evident to her that the ones on the disease modifying treatments (about 40%) do much better than those not.  This is a strong argument as I feel she genuinely cares about me and my MS.  I have had long talks with her where she hears me vent, complain, and wish there were other more effective and more pleasant treatments.  She knows of many patients on the alternative treatments and they are comfortable with the decision they made but they simply do not do as well as the ones taking the CRAB drugs.  I don’t feel she has an agenda to push.  She listens to me and continues to steer me back to the Rebif.   She said that if I quit the Rebif and have an exacerbation, it may cause permanent damage.  It is something I need to consider carefully.

I don’t think my injections would be bothering me if my MS was not acting up.  So that seems to be what needs to controlled.  But dammit I can’t do it.   That drives me crazy.  The total lack of control is what drives me nuts!  You can’t control MS.  It is foolish to even think so.

So here I am again, deciding on whether to continue with Rebif…

Today I hate MS…

There are many days were MS does not bother me beyond small annoying things.  There are even days (if you can believe it) where I am thankful to have MS.  But today I hate it.  I think MS sucks.

My hands hurt and tingle very badly.  I should be used to this one, but on bad days they are much worse than a good day.

My face occasionally has sharp intense pains that cause me to jerk or even yell out in pain when it happens.  Not sure what the hell that is, but it also sucks.

My face feels very hot.  Maybe it is a fever or something but whatever, my face feels hot.

My feet feel “big”.  I know, “What the hell does that mean?”  Well when I walk they are a bit numb and it makes my feet feel like my shoes are not there or they are too big for my shoes without my shoes feeling actually tight.  How weird is that?

My legs have bothered me the last two nights while I tried to sleep.  Some nights they keep me awake because they get restless.  Today at the health club, as if in defiance, I jogged/ran on the treadmill today for 30 minutes to show my legs who is “boss”.  It seamed to work as my legs have calmed down and it is only my feet bothering me today.

I have been having issues with very bad left eye twitching.  Whenever anyone sees my eye twitch I often hear how it happens to them too.  Maybe it does, but that doesn’t make it any less annoying for me.  Maybe it makes it worse, because by saying it are you really saying it shouldn’t bother me?  Can you tell I am a bit edgy because of all the symptoms lately?

It is the holiday season, and shopping is pretty much unavoidable, but I CAN’T SHOP.  It is very consistent that when I go shopping in a mall, MS shuts my body down. Fatigue hits hard and my legs turn to rubber, my brain clouds up, I can’t think, and if I could find a Sleep Number Store, I would love to go in and lie down.  The MS occupational and physical therapist I see tell me this is a very normal response in MS.  Something about the extra burden of balance put on the body by all the distractions for the eyes and wear you down neurologically.  Here I thought it was just because I was a man.

I have not been writing much in my blog lately, but today was an easy one.  It is so easy to bitch and complain about having MS and much harder to see the good in it.  Someone recently reminded me that we all have a disease that we need to live with.  Maybe some don’t  have a name for it yet, but mine is MS and today I think it sucks.

Thanks for listening…

That I would be good… Alanis Morissette

This morning I was at the club doing my workout and a song came on my iPod that I can really relate to:

that i would be good even if i did nothing
that i would be good even if i got the thumbs down
that i would be good if i got and stayed sick
that i would be good even if i gained ten pounds

that i would be fine even if i went bankrupt
that i would be good if i lost my hair and my youth
that i would be great if i was no longer queen
that i would be grand if i was not all knowing

that i would be loved even when i numb myself
that i would be good even when i’m overwhelmed
that i would be loved even when i was fuming
that i would be good even if i was clingy

that i would be good even if i lost sanity
that i would be good whether with or without you

I think this is about recovery over an eating disorder but whatever the interpretation, it is just a great song.  The “i got sick and stayed sick” line works for me.

Take care and stay healthy!

CCSVI and Multiple Sclerosis

There is some excitement and talk in the MS community about Dr. Paolo Zamboni and CCSVI and how it relates to MS.

CCSVI stands for chronic cerebrospinal venous insufficiency. Basically, this means that there are blockages and narrowing of some of the most important veins that drain the blood from the brain (and rest of the central nervous system) back to the heart.

The evidence from some studies in people with MS shows that these blockages lead the body to find alternate routes to shunt the blood out of the central nervous system. This leads to strange flow patterns, as the blood has to use other vessels. This is presumed to lead to iron deposits and autoimmune activity, which (according to this theory) accounts for the plaques that are found in MS patients.

The theory then is to open these closed or narrowed veins and the improved blood flow would then “cure” MS. This is what is being proposed and or at least presented by Canadian television. The procedure is labeled the “Liberation Treatment”.

My opinion is (if you care) that new theories about MS are needed. Obviously the older ones are not helping much with a cure and maybe steering the research in a new direction will yield some better results. I think it is a bit premature, and I am sure Dr. Zamboni does not profess to have found it, to talk “cure”. But it certainly is giving me some hope that was not there yesterday. I am excited about the possibilities of Dr. Zamboni’s research. In fact, I would like my veins to be checked out for blockages and to be opened just in case it may help. What if it does help me? That would be AMAZING!!!!

I think the research and the results and the testing will be slowed because this is such a different theory and goes against what is generally accepted in the scientific community about MS. MS is an autoimmune disease and we need to treat it as such. Blah-blah-blah-blah. Already the MS Society of the US and Canada have quickly come out with statements poo-pooing the findings (in their own subtle ways). This makes me a bit angry. These organizations are supposed to be helping patients with MS by working to find a cure or better ways to live with this stupid disease. I am not too sure they have this same goal. While I don’t think they should be cheering Dr. Zamboni or writing him a big fat check, I do feel they should be quickly organizing testing to help prove his theories to be correct or incorrect. That should be their short-term goal. Let’s get to the bottom of this rather unique idea behind MS. What could it hurt to investigate it to some logical conclusion?

MS is a bitch to live with and it is as much a pain to take the supposed current treatments. But what if these icky treatments are going about it completely wrong? What if MS is not an autoimmune disease? I seem to remember that ulcers were thought to be caused by stress and diet for years and then researchers discovered a bacterium was the cause and it was easily treatable with an antibiotic. I don’t want ANY new idea or concept about MS to be discredited before it has a chance to work.  There… I feel better now.  Thanks for listening to my rant.

MS rules my mornings…

I should start out saying that since my MS diagnosis I have been very motivated to get my body in as good as shape as I could.  The person who came to talk to me about taking Rebif injections when I was first diagnosed discussed the benefit as she saw it.  She went to many MS functions and she commented that those who were fit were FAR better off than those who were not.  She also said that those who took the disease modifying drugs (CRABs) were also so much better off than those who chose to not go on the drugs.  She was the main person who got me going on taking the Rebif to modify my disease and the one who was instrumental in getting me deciding on an exercise routine.  I was unable to thank her because she left the pharmacy company shortly after that and went into some sort of mental support group for those with MS.  I was never able to track her down.

How does MS rule my mornings?  Well… no other time during the day does MS make itself as known as during my morning workouts.

Before I get into that I should also say what an impact that exercise has on my MS.  It rocks!  Exercise is the single most import thing that I can do to impact my everyday existence with this stupid disease.  Exercise can help anyone to feel better and to be healthier.  It is a no-brainer. But what it does for me is far more important than what it ever did for me before MS.

The biggest MS disability for me is fatigue.  It is a tired and drunken state where my legs feel like rubber bands, my brain fills with fog and confusion (more than normal ), and my whole body buzzes.  Sometimes it can even result in spinal seizures and other more troubling symptoms. But exercise makes it stay away.  On days where I exercise it almost never materializes.  It is VERY reproducible.  I don’t exercise on the weekends (to give my body a rest) and the MS fatigue almost always rears its ugly head sometime during the weekend.

I should point out that a casual or non-intensive workout routine does not have the same fatigue modifying results that my heart-pounding, energy-intensive, adrenaline-kicking workouts do.  I believe it is the adrenaline that is generated in my workouts that propels me through the day and keeps the MS fatigue away.  When MS causes body “issues” and I do a lighter workout as a result it does not impact my fatigue in the same way.  That is why I believe it is the adrenaline that impacts the MS fatigue.

How do I get to the point where I know my workouts are intense enough to give me the fatigue altering results I want?  I just feel it.  I get to the point where I am about to give up because it hurts too much or I am too tired to go on and I push just a bit more.  Then I feel it; that second wind.  That point where the body “kicks it up a notch” as Emeril would say.  This is the point I need to get to in every workout.  I can’t just go on the elliptical for 45 minutes to get there.  I can’t just go on the bike for an hour to get there.  I need to do more.  I need to do intervals with intense all-out work followed by an equal recovery time.  It is the all-out time that gets me to where I need to go.

So I still have not explained how MS rules my mornings.  My workouts are centered around and affected by my MS in almost every way.  My workouts remind me of how MS affects my body.  Spasticity runs rampant in my legs.  I need to stretch my legs out very carefully before and after my workouts.  Even with my intense workouts, tons of careful stretching, physical therapists, massage, ice, and heat I still can not do what I want to do during my workouts.  I want to RUN.  I try to run on the treadmill or even around the track at the gym and I can not do it.  It always results in a torn or pulled hamstring, quadriceps, or calf.  My calves are the worst.  Excruciating pain prevents me from running on the treadmill.  I want to run because I can’t.  Does that make sense?  MS is preventing me from doing something and I HATE it.

I continue to try to run on the treadmill.  I have given up running on the track after tripping and falling a few times and looking like a fool.  So I try the treadmill.  I can walk fine, but I need to get my heart rate up.  When I sprint or even jog on the treadmill it only takes a few minutes before the tightness in my legs from spasticity wins out and I pull or tear my calf muscle.  I had set a goal a few months back to run in a marathon, but it is not looking possible at this point.  You have no idea (unless you know me) how much this frustrates me.

Because I continually try to make running work, I end up limping a lot during the days.  Is that being stubborn or what??

Besides the spasticity and frustrations running, MS also rules the mornings when I do the stairmaster, elliptical, or other contraptions at the health club.  As almost any MS patient will tell you, as your body heats up, symptoms usually appear.  Because the workouts are so intense, my body heat must be climbing pretty good. My body usually becomes a tingling, heat, cold, and stinging stage during my workouts. But it is what it is.  It will go away when I cool down, so the best I can do is ignore it.  If it is pain, it is sometimes difficult to tell if it is nerve pain (MS) or if it is muscle pain resulting from an injury (probably from spasticity – also MS).  If it is nerve pain, I can push through, but if it is a muscle injury I need to recognize it and STOP.

MS also rules my mornings because I need to give myself an injection every M-W-F after my workouts.  This is not as big a deal as it used to be as I have very few side effects from the Rebif anymore and it doesn’t bother me to stick myself with sharp objects. Mornings are also the time I take my supplements to help with general health and my MS.  I take L-Carnitine, CO-Q10, Omega 3, and lots and lots of Vitamin D.

If you have MS like me, then the biggest thing I can stress is to try exercise as a way to control or impact your fatigue.   You have nothing to lose and almost everything to gain.

Take care and Stay Healthy!