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Dr. Strangelove and Tysabri

Sep 30, 2011 - 9 comments

Though I believe strongly in using a DMD for MS as soon as one is diagnosed, I really haven't been on anything since fall of 2008.  My disease seemed static, my lesions few, and my apathy was great.  I had been on Avonex from diagnosis for about 18 months and stopped it due to the cost.  While I was on it I had these daily, kind of matter-of-fact thoughts about suicide.  I wondered all the time how long I would be willing to live feeling wretched like this.  It was nothing dramatic or immediate and seemed rather normal. I didn't even bother to tell my neuro.   A couple months after I stopped the interferon I noticed that those thoughts had disappeared.  Hmmm.

I told my neuro about it and he stated unequivocably, "No more interferon for you!"  As I have struggled for decades with depression, it was clear that this side effect of the interferons had really worked a number on me.  Then the question was what to do.  None of the neuros at my center think highly of Copaxone, and my symptoms were pretty stable.  Not being on a DMD made it easy to pretend my disease wasn't serious.  I'm sure many of you are thinking that this was truly dunderhead thinking for a physician.  Yep!  Guilty.  Denial is a beguiling and attractive way to slip along while giving sage advice to everyone else.

But, since nothing at all was going one with my neuro exam and my MRIs Tysabri seemed too big a gun to jump to, so I sailed along for almost three years on nothing.  As I made all of you painfully aware, last year was a doozy of a rollercoaster for me personally and medically.  After my father died in March, it seemed that my muscles were weaker, my energy dipped into the minus deficit column, my mood lousy.  All was complicated by the constant frustration of the severe incontinence and the continual urine infections.  In April, for the first time my neuro exam showed a definite worsening.  My neuro was unhappy bigtime and I was really to do anything to try to get better or stop the slide.

He wanted me on Tysabri.  I was agreeable.  I had never felt that the quoted 1:1000 risk of death from the brain infection PML was a huge risk.  Afterall, since Tysabri is intended mostly for that disease which is worsening and nothing else has helped or been tolerated.  It was easy to compare 100% chance of worsening (heck! I was living with that) to a 0.1% chance of a catastrophic side effect.  For me it was a no brainer (sorry, unpunny).

Still, the cost of this behemoth was daunting.  I applied to the Chronic Disease Fund for help with the copay.  Medicare would pay for the Tysabri through part B - as a hospital-administered infusion.  I was accepted and ended up with a co-pay of $30.  It took a while to schedule the med because I fell and broke both my hands and then my mom fell and broke her shoulder, elbow and pelvis.  I couldn't drive and she needed 24/7 help to get up and do anything for about 5 weeks.

I wondered if I would notice anything about the Tysabri.  Certainly there was no indication that Avonex was having an effect, because that is not how it works - It prevents worsening.  It is hard to measure something you have prevented, no?  But, a few people on the forum had said that they actually felt better.  Could this really be true?  I have felt bad for so long, that I no longer remember how I felt when 60-70 hour work weeks were normal and I didn't feel tired all the time.  Since 1999 I have spent so much time in a recliner that I have become shaped like one.  The people at Lay-Z-Boy know me by name (or possiby by shape).

I had my first infusion July 8.  Word on the street was that one generally began to see a Quality of Life improvement by the 4th or 5th infusion.  The infusion was unremarkable, except that I got a lot of knitting done.  About two weeks later I noticed a subtle bump in energy and mood.  Was it real?  Was it the power of hope?  It didn't matter.  It was cool as I noticed that I was more willing to get in the car and run errands or do dreaded paperwork.  During this time I had a fairly bad spider bite.  My upper arm got bright red, and hard and swelled up.  The pain/itch was hardly bareable.  I'm sure there was an enormous stimulation to the immune system, yet still I felt a little better.  My next infusion was the required 28 days later.  No problems,  Now August in the Pacific Northwest is generally warm with many days (a dozen or so) over 90.  Not this year.  We were having this glorious, sunny weather in the 60's.  So the temps were conducive to feeling my best.  Within a few days of the 2nd infusion I felt good.  My mental energy was there - I "wanted" to do stuff.

Physically, I am akin to a giant, beached jellyfish.  But, I have a bum ankle after the sprains and fractures of last year.  My ankle had started to hurt and feel like it was going to 'give way' with weight-bearing.  In June I saw the ankle/foot specialist for the Portland TrailBlazers and got really bad news.  The bony structure of my right ankle and foot was collapsing.  We were going to try a different brace, PT and hope for the best.  If the collapse continued I might be looking at an attempt to surgically remake/repair the ankle and arch.  I would just as soon crawl into a sleeping bag with snakes.

I don't know about you guys with severe fatigue and your ability to follow through with physical therapy.  I used to be really disciplined, but not after the onset of MS.  Previous work at PT stopped pretty much as soon as the appointments did.  See?  Beached jellyfish.  I was going to PT and doing well.  I could see slight, but real impovement in the strength of some key muscles.  It was definitely not enough to climb Mount Everest nor to hit the motivational circuit, but muscles that I thought were gone forever had improved.  Wahoo!!

Meanwhile I had the stamina to run more than one errand at a time, despite ongoing UTIs and that dang spider bite.  People who know me were complimenting me on the sparkle in my eyes and the glow of my cheeks.  I felt positively pregnant!!!  I felt better!  About 5 days before the next infusion I started to droop, but had heard other people comment on the same thing, so it wasn't too worrisome.

Infusion #3 was a disappointment.  It coincided with two weeks of 90 degree weather, a couple of worse UTIs, feeling raunchy on Cipro and the Augmentin twice.  Besides that I was now on Vesicare for the incontinence at double recommended dose.  Major side effect - sleepiness.  For 2 to 3 weeks I slept every day until 3 or 4pm and went back to bed at midnight.  I felt ******.  I can't describe the sadness, disappointment and depression of losing that boost in energy.  Was that all I was going to get?  A tease and then have it taken away?  This can be a very cruel disease.  It has taken a lot from me and I am NOT a better person for it.  Yeah, I was NOT receptive to any Pollyanna talk.  (simpering voice, " Well at least you had two weeks of feeling better...blah, blah" .   Me - "Oh, Sit On It!)

I saw my neurologist on Monday - 4 days ago.  Simultaneously the weather turned to our usual fall stuff, days in the 60's to early 70's, occasional showers, lots of sun.  The day I saw him I felt enormously better.  I actually drove myself and my mom came along.  He is about 45 miles away.  My exam was "modestly improved."  The strength that I had built with PT was holding.  I told him my woes of September, the UTIs, the nasty antibiotics, the sleepiness of the Vesicare and that I felt no improvement after the 3rd infusion.  He was undaunted.  He said it was the heat.  All of his patients felt awful.  He had no doubt that the Tysabri had actually worked it's magic, but that the heat, the meds, the infections had just countered it.  He was sure that without the Tysabri I would be even more a mess.  I believed him.  Besides, I already felt better in the cooler weather.

I am now in the doldrums of the few days prior to my 4th infusion next Monday (3 days).  It's okay.  I believe the energy will return.

I will do a thread on the forum on the new info that is coming to light about what we are learning regarding PML risk.  It is mostly very good news.

Having new mental energy and the matching physical energy to get more than a nap accomplished is a miracle.  Yes, I love Tysabri.  Even though I still fatigue after effort and the weakness returns, each day te strength returns and there is a new possibility of getting more than a nap accomplished.

I hope that answers all you inquiring minds.


Analyzing the Deluge

Jan 05, 2011 - 6 comments


I'm getting closer to undrstanding the sociolgy and mechanics of the stuff I am going through.  When we left this, we knew that incontinence and dead mice were related.  We also know that MySterious things happen at night.  I've been having rough nights as the face pain (TN? TMJ? Dental issues?) is much worse at night.  I'm also taking some narcotic meds which make me a little scatter-brained.

Last night I awakened with the knowledge that I was already leaking.  I leapt up out of my recliner, unceremoniously dumping the cat at my feet while simultaneously peeing on her.  Poor girl.  She awakens slowly and really didn't know what hit her.  She didn't like it when she found out.  At least I didn't kick her this time.  My incontinence pad (I, know, TMI) had malfunctioned.  So it was another night of mopping and packing clothes into the laundry room.  At least now we know how the mice fare so badly.  They really are washed away in the flood!

I had to analyze what had gone wrong, because I am usually a few steps away from from chair before any overflow leaking happens.  In this case, the problem with the pad was that it wasn't there.  Ooops.  Turns out you actually have to USE them in order for them to work.  Oh, well.  Do I really have to go through this for the rest of my life like my Uro-Gyne predicts?  Drat.

And, to make up for the bad night, Fizzy brought me a new little field mouse and played with it for the next few hours.  Oh, joy.

Stay tuned.


Musings On Mobiltiy and Freedom!

Jul 28, 2010 - 8 comments

As lovely as it sounds, enforced rest can be stullifying.  Yes, I love my recliner, but that was always knowing that I could tiptoe out and do stuff or see friends.  It's two weeks now that I have been sitting around with my leg draped over my neck to keep the swelling down.  It's a'gettin' old.

I got the walker I have been promising to get for lo' these many eons.  It's not as much help has I had hoped.  Maybe when the leg is healed and I can really get out and walk it will help.  It's fancy, though.  I chose the red one, with the big wheels, the seat, the brakes and the hemi.  It needs the mylar spangles that come out of the handles, like the Huffy I had when I was little.  I don't name everything, but, in my family things tend to get named.  My mom calls all squirrels Cheryl.  Don't ask.  We don't know why.  Her walker is named Charlie.  It fits.  Her old rigid, aluminum walker we referred to as her chariot.

As soon as I zoomed the house, taking my safe 4" steps, I realized that my walker was named Ferdinand.  He just needs some horns.  My mom suggested Texas longhorns, but I think the usual curved ones.  I see myself bulling my way through stores and lines.  Sometimes a poke in the derriere is what people need.  Wasn't there a cartoon character of a bull named Ferdinand when we (some of us) were little?  

I made a break for it and went to the store today.  I asked if they had any.....I could not formulate the word for the electric carts....and asked the manager if they had any of those Ride'Em Mobiles.  He laughed and had one brought to me.  I've ridden them before, but this time felt justified and entitled.  Whoopee!   Those buggers are really maneuverable!  Nothing like planting myself in front of a running, out-of-control 10 year old.  Neh, Nuh, Neh, Neh.  Back and forth through the frozen section - and saw that Haagen-Dazs was $1 off per pint if I bought 5.  Five it was.  Someone (unnamed) will surely eat them.

Childish?  Who was it that noted that while we can't stay young, we can be immature forever?  It felt good to be out and be able to load my basket with treats.  It's my money and I do believe that chocolate has great anti-oxidant powers.  So what if I have to eat three times the milk chocolate to get the same effect.  If someone tries to tell me that the sugar cancels that out, I will cover my ears and hum.

I had cabin fever.  We are back to the usual summer days of low 80's and a cool breeze, but with sun.  These days I can endure.

I got my new copy of Dragon Naturally Speaking today and am going to learn to dictate my entries into the computer.  This should make me much more prolific.  Whoopee!

I'm looking forward to another ride on a Ride'Em Mobile.  Shopping has just taken on a whole new attitude.


My MS History is Rewritten!

Jan 25, 2010 - 20 comments

Today I had the first appointment with my new MS Neuro.  This is a man in his 60's whose life has been MS for decades.  He's brilliant, kind, funny, compassionate and speaks the people's tongue.  He is also Fluffysmom's Neuro.

I let him guide the visit, as he clearly has a routine and a rhythm.  He basically went all over how all of my symptoms have shown up, did a detailed (read that ~45 minute) exam, looked at my most recent MRI and told me what he thinks.  The man makes sense.  And I learned a whole bunch of things for the forum, plus had some more validated.

To begin with, he doesn't see anyway that my disabling vertigo from 1999 to about 2004 was just peripheral problems.  He acknowledges that my vestibular specialist, Dr. Epley, did find and treat some peripheral (inner ear) problems.  But, he says, that my MS began in 1999 - of this he has no doubt.  That means that I must resign as a person whose first symptoms were after the age of 50.  Mine (revisionist version) began at 47, which also means I am 11 years into my disease.

It also means that I saw 7 neurologists, none of whom considered MS as my diagnosis.  The most they came up with was Vertigo and Personality Disorder.  That did some harm.  So now I am on neuro #9, having been diagnosed by #8 who has moved out of area.

On exam he found R hemiparesis - weakness of the R leg and arm.  I have "modest" spasticity in those limbs.  In general medical lingo it often goes Mild -> Modest -> Moderate -> Major (Severe).  Diffuse hyerreflexia R > L.   R positive Babinski.  I have a lot of areas with minor amounts of altered sensation on both sides, none very severe.  Positive Rombergs even before I close my eyes.  Unable to tandem walk or stand.  Spastic gait.  Rapidly alternating movements slightly reduced on right.  Ocular dysmetria (the eyes don't move together)  in looking toward the left, with nystagmus (new).

Then he told me something I didn't know.  The right side of my face is slightly flattened out, noticeable in the naso-labial fold. This is from weakness of the facial muscles from Cranial Nerve VII.   Also, my right eye is more open than my left.  There is a muscle that encircles the entire eye called the "obicularis".  When it contracts, it winks the eye tightly closed (as opposed to just allowing the lid to drop.)  Think of it as the squint muscle.  It acts as a sphincter.  So when it is weak, the eye is often more open.  He says I use my R eyebrow muscle to lift my lid more when I gaze upwards.  I had no clue.  It all sounds very attractive.  Now, I'm going to have to go stare at myself in the mirror.

I just did and he's right!

Also, R foot and lower leg coolness with swelling, purple mottling, and acrocyanosis.  This is what other doctors had referred to as Reflex Sympathetic Dystrophy.

That's pretty much it.  Mostly what I have always had with some new eye movement difficulties and nystagmus.  Exam pretty much unchanged.

MRI (Jan, '09) - Hardly worth the effort.  A couple measley T2 hyperintense lesions in frontal lobes, a few scattered punctate ones.  Cervical spine - good-sized R sided lesion in pyramidal tract and involving the sympathetic nervous system which runs up and down along side the motor tracts.  Tiny one in the R medulla, equivocal one at T1.

Then he told me what he thought.

This is where he clarified things for me.  Because of the insidious loss of strength on my right and gradually worsening bladder troubles, I have worried that I might have PPMS.  The loss seems greater if you look at the disease only from 2004 onward.  But, if you look at it for 5 additional years, it's not much deterioration.  He put it this way:  I have RRMS, but have a great deal of lesion load that is in axonal degeneration rather than inflammatory T2 lesions.  This language is the one we use when describing the accrual of disability.  HOWEVER, this is not a PPMS process, because it would be very unlikely to have PPMS for 11 years and NOT have both legs involved with motor weakness and spasticity.  The classic pattern of PPMS is almost invariably a spastic paraparesis - weakness of both legs with spasticity.  Even if it just starts in one leg, the other becomes involved eventually, sooner, usually, than later.

I jokingly made a comment about how so few lesions can wreak such havoc on my body.  He snorted and said that we can't see "most of the lesions" in MS with our state of the art machines.  (Take note, Friends!)

We talked about my increasing L'Hermittes - the reason I saw him today.  The good news is my "old" L'Hermittes was not L'Hermittes at all!  (If you remember it is the vibrational, jelly-like feeling in my Left anterior thigh).  When he was examining me, I had a very tender spot over my left pelvis at the hip.  My problem is something we have mentioned on the forum called Meralgic Paresthetica.  This is damage to the femoral nerve from a variety of causes - in my case likely my obesity and overhanging abdomen.

However, the new stuff which is also vibrational, jelly-like buzzing in my left torso, arm and L face IS a new onset of L'Hermitte's Sign.  I commented "the facial wierdness couldn't be from a cervical lesion."  He grinned and said, "Aha!  That's because you are a pediatrician and not a neuroanatomist!  The sensory root nucleus of the Trigeminal Nerve extends down from the pons all the way to the 2nd Cervical vertebra."  Then it was my turn to say "Aha!"  So, all of you to whom I have said that a cervical lesion couldn't cause face pain or numbness - you may flog me in turn!

Then we talked about meds.  I wanted to go back on Avonex, but he was a "no go" on that, because of my report of morbid thinking on it.  It seems that he does not think my pattern of damage will respond to the DMDs.  I said I didn't want to go on Copaxone, because I would rather be depressed than itch!  He doesn't like or use Copaxone unless the patient really wants it.  He calls it a "wimpy med".  I knew some neuros felt that way, but clearly not all, and we have members here who have done stunningly well on Copaxone - so I think something must have happened in the past to bias him against it.

He said he would rather wait for the oral meds with me.  This surprised me, but it fits with other things he said.

He thinks that as far as the incontinence has gone that I should be on a med for it.

He wants me to use a cane - ALL the time.

Finally, he said my prognosis was very good.  I didn't ask, "good for what", but I took it to mean that he didn't think I would become very disabled.  Yippee!  I think my whole attitude will turn around.  (Do you think I could still become a ballerina?  Should I not have turned down DeeVee's gift of a pink tutu at Christmas?)

Another pearl that dropped from his lips was that 27% of people with MS will develop Trigeminal Neuralgia at some point in time.  That is a big number.  I questioned it, and he repeated it.  It can be quite variable in how it shows up, and a lot of doctors wrongly dismiss the atypical presentations.

More later if I think of things.