Saturday, June 9, 2012

Some symptoms of MS part two

I have been eager to continue where I left off yesterday, so here goes!
Fatigue.  I feel this is one of the most difficult for us to deal as it is debilitating, it's almost impossible to explain and others have trouble sympathizing or even trying to understand.  What happens to me is this.  I get up, go to the bathroom, make my way to the kitchen so I can give my three kitties fresh food and water, check my blood sugar, take my insulin, and many times this is enough to make me feel completely exhausted, so I collapse on the sofa.  It's also the cause of many low blood sugar incidents, but when I'm feeling too fatigued to even get a cup of coffee, how am I supposed to think of eating?  It makes me crazy, but it happens.  To make it easier to understand, here is a list I found on of some of the more common symptoms of MS fatigue.  

While everyone experiences "being tired" occasionally, the fatigue associated with MS has certain characteristics:
1.-  It occurs daily.
2.-  It may be present in the morning, even after a good night's sleep.
3.-  It worsens as the day progresses.
4.-  Heat and humidity aggravate it.
5.-  It comes on suddenly.
6.-  It's more severe than normal fatigue and more likely to interfere with daily life.
For some people, there are additional related symptoms, including:
1.-  Feeling of heaviness in the arms and legs.
2.-  Worsening of other symptoms, such as problems with balance or vision, or slurring speech.
3.-  Difficulty concentrating.
4.-  Vertigo or dizziness.
5.-  Headaches.
6.-  Feeling ill, like you have the flu.
7.-  Depression.
It is also worth noting that anywhere from 80% to 95% of those with MS experience this sort of fatigue and it is the MOST COMMON symptom.  According to the MS Society's web page:  "fatigue can significantly interfere with a person's ability to function at home and at work, and may be the most prominent in a person who otherwise has minimal activity limitations.  Fatigue is one of the primary causes of early departure from the workforce."
As difficult as it may be to explain MS fatigue, rest assured that IT IS REAL and not only in your head.  If you feel tired, don't fight yourself.  Take a seat or lay down for a bit.

Bladder problems.  Yeah, this is a fun one.  Those with MS can be plagued with either over active bladder or not being able to empty the bladder.. or, if you're lucky like me, you get to have both simultaneously.  Yay!  Gotta love MS. (insert sarcastic eye roll)  Luckily, I have a urologist to treat my bladder problems and we communicate very well and I am very pleased with my treatment plan.

According to the MS Society, bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully.  Bladder dysfunction occurs when MS lesions block or delay transmissions of nerve signals in areas of the central nervous system that control the bladder and urinary sphincter.  It is this muscle that gives people voluntary control over urination.

Symptoms of bladder dysfunction can include:
-- frequency and/or urgency of urination
-- hesitation in starting of urination
-- frequent nighttime urination (known as nocturia)
-- incontinence (the inability to hold in urine)

These symptoms can be caused by a "spastic" bladder that is unable to hold the normal amount of urine, or by a bladder that does not empty properly and retains some urine in it.  Retaining urine can lead to complications such as repeated infections or kidney damage.

Left untreated, bladder dysfunction also could cause emotional and personal hygiene problems that can interfere with normal activities of living and socialization.  It is therefore important to seek appropriate medical evaluation and treatment early, so that the cause of the bladder symptoms can be determined and treated, and complications avoided.

Bowel problems.  Another fun one we have to deal with!  Believe it or not, I didn't find any information online which I found adequate or even correct for this subject, which is really very disappointing to say the least.  The MS Society claims that "constipation is a particular concern among people living with MS, as is loss of control of the bowels.  Diarrhea and other problems of the stomach and bowels also can occur.  Causes of constipation include insufficient fluid intake, reduced physical activity and mobility, and decreased or slowed "motility" (movement of food through the intestinal tract).  Certain medications, such as antidepressants or drugs used to control bladder symptoms, might also cause constipation.  Loss of bowel control in MS could be neurologic in origin or related to constipation, and it should be evaluated by a physician or nurse." 

OK, what do I think?  I think I try to drink as much water as possible but still can't "go" because my brain can't remember how to do it!  I learned that it is perfectly alright to take Colace (it is NOT a laxative nor it is a stimulant) on a daily basis as my body has no "push," as one of my previous neurologists explained it to me.  A laxative makes things too soft but taking Colace honestly keeps everything more natural and I am as close to "regular" as I've been in years.

And I will continue with the list tomorrow!

Friday, June 8, 2012

Explaining some symptoms of MS, part one

What is it with pain lately?!!  Oh, my goodness there seems to be no way to avoid it even though I've learned to pace myself, steer clear of doing too many things in one day and not over-exhaust my body and mind.  It has all seemed quite futile as I've been in terrible pain and my only relief has been my "beloved" TENS unit.  I really do love it and highly recommend this device for MS and other types of pain.

I wonder sometimes if I make too much of a big deal over things I should just take as they are.  What am I talking about?  Well, let me post this picture and I'll start there.
When I read this list of symptoms of MS,  I didn't feel any of it seemed too devastating. It doesn't sound horribly bad to me as they aren't explained and many may wonder, what do ataxia or spasticity mean?  Even the spell check feature on the computer considers spasticity a misspelling or nonexistent word! I need explanations to give these words MEANING as I'm sure many others do as well.  Allow me to break it down.

Visual disturbances.  My first symptom, as it is for many, was Optic Neuritis (ON).  Aside from this, there are issues such as uncontrolled eye movements (utterly annoying) and double vision which is terribly frightening!

Balance and coordination problems-ataxia.  First, I should explain what ataxia means since it's a word I'm sure few of us knew until we found out we had MS!  The meaning of ataxia, as published in The American Heritage Science Dictionary, is the "loss of muscular coordination as a result of damage to the central nervous system."  I also read (can't remember the source) that ataxia is caused by the inability of the brain to regulate posture and the strength and direction of limb movements.  Yup, sounds like MS!  I find it humorous how the list above failed to mention WALKING (gait) DIFFICULTIES as a symptom since this is when balance would prove to be a problem.  Idiots, I swear!

Spasticity.  According to the MS Society's website, "spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements).  Is is one of the more common symptoms of MS.  Spasticity may be as mild as the feelings of tightness of  muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs.  Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain.  Although spasticity can occur in any limb, it is much more common in the legs."  And it is HORRIBLE!
Altered sensations.  Altered.  What a "politically correct" way to say our sensations become utterly FUCKED UP from one moment to the next!  When I mention my feet are numb, most don't consider this to be too big a deal, but think about this for a moment.  I have not felt my feet "normal" since I was 22 or 23 years old!  It is anything but normal and yes, it is a big deal to not feel the floor or ground you are walking on!  I want to feel my sheets, socks, water.. anything!  And then they start to itch uncontrollably for no apparent reason other than they just can.  It's maddening.  But at least it's not painful, as the burning and pins and needles becomes.  Sure, everyone gets the pins and needles sensations when their feet are waking up from being asleep but imagine this happening for hours on end and magnified at least 100 if not 1,000 times!  THAT is MS and that is our reality.  Altered is a rather insulting way to describe what we live through.

Abnormal speech.  There are different sorts of speech problems (the medical term is dysarthria) but the one that has affected me has been slurring my words to a point of not being understood.  Very annoying and extremely embarrassing.

OK, so I think I'll stop here for today but I WILL continue either later this evening or tomorrow as I believe it's important to hit on all these points!

Wednesday, June 6, 2012

No more Tysabri for me.. and I feel great!!!

I reached one of the most important decisions in my MS today.  As Mom was driving to the neurologist's office this afternoon, I opened up about how I felt on continuing with the Tysabri.  Dad couldn't accompany us as he was waiting for some workers to finally show up at their house to work on their swimming pool, so it was just us two girls.

I've never been completely comfortable with this treatment and Mom is fully aware of this, as is Dr. Short.  I will confess that one of my main incentives for continuing with Tysabri has been a less than noble one.  I learned after the first infusion that a private insurance policy I have, called Hospital Income, would pay me $100 each time I underwent treatment.  I've had this policy for many years and it has come in handy whenever I've been hospitalized with MS problems or for anything else but I hadn't even considered being paid for the Tysabri!  Being as broke as I am, $100 extra in my account was a large amount and allowed me to pay for, at least, my Jinger's monthly hyperthyroid medication.  When I mentioned this to my mom on the way to my appointment, she was visibly shocked.  She had absolutely no idea that this was why I had chosen to continue with a questionable treatment I was really not in favor of being on.  The way my mom is, she didn't tell me to stop taking it immediately as this was a ridiculous reason to stay on it, but said that I needed to really think about what I thought was best before continuing with it.
When I was called in to see Dr. Short, we talked for a few minutes and I mentioned how I wished he had brought up the TENS unit a while back as it has been helping me quite a bit and has lowered my pain from an 8.5 or 10 down to a 7 on most days.  That's quite a bit of improvement as I can function much better now.  I then spoke with Dr. Short about the Tysabri. He wasn't surprised at my apprehension to continue but then I mentioned how one of the inventors of Tysabri had been opposed to the FDA approving it.  This in itself should make ANYONE apprehensive to take it or recommend it!  But it wasn't even just this that led me to my decision.  I have know that Tysabri can lead to the deadly PML virus (lethal brain infection) but I'm at a point in my life where I am at peace with myself and my MS.  If Tysabri had been available 15 or 20 years ago, death would not have deterred me from taking it but I am not that same person anymore.  I have too much to live for!  I have my wonderful, kind, loving parents.  I simply adore my three little kitty daughters and can't imagine a day without them.  I love my brothers.  I love my extended family, even though I am not able to see them, but I know they are there and know they love me, too.  I love all my friends!  Life is good!  Why would I want to risk my life over a medication that may or may not help me when I am only slightly disabled compared to how horrible it really could be?  I would rather take my chances with the MS and face it head on than hide behind a drug that could potentially make me worse or kill me.  I'm worth more than that.  So all this being said, I did not continue with my scheduled infusion and will not receive any more treatments.
I'm including the article I read, which helped me reach my final decision.. although I believe I would have come to this conclusion in the end.

From a press release in 2006--Stanford Doctors Spotlight Fatal Flaw in MS Drug Trial

Steinman was involved early on in the development of the drug, publishing on its effects in 1992. Even then, he had suspicions that the drug’s mechanism of action — blocking the entry of immune cells into the nervous system — might also make patients more vulnerable to infections. Indeed, PML is an infection that usually affects people whose immune systems are compromised.

“It was a shocking development that a drug that had so much promise and so many potential benefits ended up causing two deaths and one very serious injury,” said Steinman. “It is kind of a cruel Greek drama, something that may be more beneficial than anything yet developed for multiple sclerosis, but yet may be far more dangerous than those other approved drugs.”

In fact, the inventor and co-author warned about Tysabri returning to the market in 2006.  They questioned the wisdom of the FDA's approval of this drug.

But Steinman and Langer-Gould expressed reservations about the drug returning to the market. They noted that its effects, while impressive, are in general not much better than what is seen with other available drugs: The risk of relapse dropped from an average of two relapses every three years using other approved multiple sclerosis drugs to one every three years with Tysabri.

“Do you want to expose someone to the risk of death for eliminating one relapse every three years?” said Steinman. “I say no.”

“I’m not sure if it is wise to re-approve it,” added Langer-Gould. “The question is, will the FDA rise to the occasion and admit their mistake and try to prevent future mistakes or are they going to ignore it?”

Here is an interview with Stanford neurologist Annette Langer-Gould,  co-author of the Lancet paper on Tysabri, about why she spoke up after her patient developed PML in a clinical trial---the title is "So Not Worth It."

Profoundly affected by her experience with this patient, Langer-Gould, a Stanford clinical instructor, now advocates testing new drugs only on people who have exhausted their other treatment options and who have indications that their disease is progressing.

So in March, when an FDA advisory committee recommended that the drug be returned to the market, she took action. She approached multiple sclerosis specialist Lawrence Steinman, MD, a Stanford neurology professor, about writing an article arguing that if a drug has a known risk of death, it should be given only to those patients who are likely to suffer severe disability from their disease. That is almost the reverse of what happened in the Tysabri trials, which excluded the most severely affected patients.

Her biggest concern is that some patients who want to take drugs such as Tysabri might be acting on unrealistic fears about their prognosis and are poorly informed about the drug’s dangers.

(note: drugs are tested on RRMS patients, rather than progressive patients,  because pharma knows these patients have natural remissions, and this favorably effects the drugs' results.  This is the "natural course of the disease" argument used against  positive results for venoplasty for CCSVI--yet not against drugs.)

Sadly, history has shown us, the FDA ignored these warnings about Tysabri.  As a matter of fact, they approved Tysabri by a vote of 12-0.  At the time, it was said that Tysabri "waltzed through FDA approval."  The independence of the FDA panel was called into question by the legal team of one of the patients who died.

According to a New York Times article in March 2005-
Dr. Steinman said he had expressed his apprehensions about the drug in speeches and in an article in the journal Science in July and had been asked by Biogen executives to tone down criticism of the drug.

And just this January, the FDA granted a label modification with a more specific warning for Tysabri, so that it can continue to be sold- making Tysabri a "blockbuster" drug.

The Food and Drug Administration approved the revision that would help doctors identify patients with the highest and lowest risks of developing deadly brain infections linked to the drug, the agency said today in a statement.

The label change may push Tysabri’s global sales to $2.5 billion to $3 billion by 2016, Michael Yee, an analyst at RBC Capital Markets in San Francisco, said in an interview yesterday. Without the modification, sales may have reached $1.5 billion to $2 billion that year, Yee said. Biogen, based in Weston, Massachusetts, and Dublin-based Elan split the drug’s revenue.

And deaths and injury from central nervous system PML, herpes encephalitis, CNS lymphoma, metastic melanoma, cryptococcal meningitis and other assaults on unwitting PwMS continue daily.  It is not enough to know your JC virus status.  We are only at the tip of the iceberg understanding the long-term implications of this drug.  Most of these neurologic infections do not show up until after two years of therapy.

At Jeff's yearly neurologist appointment (which he needs to continue his copaxone treatment), his doctor again tried to talk him into beginning Tysabri infusions.  Even though Jeff has no active inflammation, no new lesions, no new MS progression, and has only healing since venoplasty three years ago, with normal gray matter on MRI---his neurologist utilized scare tactics to make him doubtful about his future.
 "You are a man, you are bound to progress faster.  It's simply the facts.  Tysabri is the best medication we have.  You should start it now to prevent future damage"

Jeff said, thanks, but no thanks.

In light of this sales pitch, the continuing and growing numbers of those with PML (242 with the disease, 52 deaths as of May) , and Marie's post on the neurological activation of the herpes virus in the brain of someone on Tysabri---I think we need to go back and document the history of this drug.  I suggested to Jeff that he print out Steinman and Langer-Gould's warning and bring it to his neuro next year.  I hope this information might help some of our readers.  Please share it with your friends and caution them.  

Because the inventor of Tysabri thinks it's too risky for you to take it.  He would know.

Tuesday, June 5, 2012

Next Tysabri infusion on the way.......

The incident I had over the weekend came and went and I'm back to my "normal self," more or less.  I still have so many questions in my mind as to what is going on with my MS and if anyone can really answer in a way that will satisfy me anymore.  If I leave the TENS unit off my body for one day, the pain returns to the way it was before I began using it.  If I do too many repetitions (more than 5 or 6) of the extremely mild movements I've learned with my physical therapists, I feel exhausted and uncoordinated for hours.  If I happen to fix my hair then make coffee AND prepare some breakfast, my hands are pretty much useless until the late afternoon.  I just feel so damn useless and need some answers or at least to be taken seriously.

Tomorrow afternoon, I go in for my 7th Tysabri infusion.  I hate that after having had six infusions, I'm still not sure how I feel about being on this treatment.  Before I receive the medicine I have an appointment with my neurologist, Dr. Short, which is probably a good thing.  I want, and need, to address a few things with him, although I'm not sure if it will do much good at this point.  I'd like to know why he did not at least suggest the TENS unit to me months ago, rather than increasing the Baclofen, my pain medication.  I would also like to question his reason for choosing to cancel the lumbar and thoracic spine MRI's which I was supposed to have had taken before my LAST infusion in May.  Ugh.  I'll just deal with all of this tomorrow.. or technically, today.
Can you believe my dad is 71?  Yeah,  neither can I!
Many things happened during the last week and one day.  Bolivia's Mother's Day is always May 27th so this was when we celebrated my mom.  This past Wednesday was my dad's 71st birthday and today (Monday, June 4th) was Mom and Dad's 46th wedding anniversary.  Yeah, it was quite a busy celebratory period!
Dad and Mom in Iowa City, Iowa in 2011 on the left and Mom and Dad in Iowa City, Iowa in 1966 on the right!  I don't know who the little girl in the pic is but I used to think it was me since I "inherited" the dress from her and my hair was similar.
Well, I hope my appointment and infusion go well tomorrow afternoon and Dr. Short is able to ease my mind.  I'll keep everyone updated as soon as I find anything out.  I just want this damn pain to stop!!!

Sunday, June 3, 2012

A decent day leads to a horrible evening.

What a day this turned out to be.  I'm referring to Saturday as I have yet to go to bed, in case anyone is wondering of which day I am writing.  My biggest complaint had been the difficulty I had had in attaching the TENS electrodes to my body.  There must be an easier way to do this of which I have yet to be made aware!  I'll have to ask my physical therapist on Monday about this as it is becoming quite exasperating many afternoons (even mornings, on occasion) when I am putting it on.  If I drop one more electrode on the floor, I swear I will scream at the top of my lungs!  It's no wonder they are not sticking to my body as secure as they once did, which is also causing the unit to not transfer strong electric currents into my sore body.
During the early evening, I was able to chat with a new friend on Facebook, whom I had been wanting to get to know better and enjoyed it very much.  It makes me sad to know how many people around the world are afflicted with multiple sclerosis yet it's also a sort of brotherhood we have between us and makes it easier to share our experiences with one another.  Yet it pains me deeply, it really does.  I've had this bitch of a disease inside my body for such a long time that I wish I could carry the pain and discomfort for everyone who has MS. There is no need for anyone else to go through this hell if I'm willing to do it for them, right?  And I really would do this, if I could.

When evening came, I wasn't doing anything in particular.  I was sitting at my computer as I usually do, reading posts from fellow MS'ers (I'm not crazy about this term but it's easier than always typing out "others with MS") while watching television as my three kitties napped nearby, when a sudden pain in my stomach caught me off guard.  I knew I would need to get to the bathroom as soon as possible, but I also knew that if I rose too quickly it would cause an accident right then and there, so I chose to wait a few seconds.

From my computer desk to the bathroom is probably about 30 or so feet in distance, give or take a few feet.  It's the few extra feet that caused me trouble.  I knew I was in a rush so on my way down the hall, I clipped the control box of my TENS unit to the top of my nightgown, I lifted my nightgown and the cords attached to the electrodes and the moment I stepped into the bathroom, my bowels decided to release.  Ohhhh, I was furious!  I was angry, upset, outraged, pissed off at myself and horribly ashamed that this had happened yet again.  My privates were completely covered in diarreah, as were my panties, floor and much of the toilet by the time I sat down.  I felt so humiliated.  I'm sure I now have a bacterial infection and need to call my gynecologist first thing Monday morning as I get these infections pretty easily.  Sure, why not!  Just one more thing to deal with.
"Multiple sclerosis interrupts the nerve tracts.  This leads to incontinence, impotence and paralysis."
This happened around 10pm and was in desperate need of a shower so I decided I may as well wash my hair while I was in there, meaning my hair won't be dry until around 4am.  I was hoping to get to bed early tonight but that, obviously, won't happen this evening.

What made matters worse is that a few years back, my bathroom floor needed to be replaced and it was far more economical for my parents to put carpet down rather than the tile I would have preferred, so now the carpet is covered in my feces.  I managed to clean and disinfect the toilet but could not do anything about the carpet so I called my dad and he will come over tomorrow morning or afternoon to shampoo it for me.  I hate so much that I had to call him but he reassured me that it was not a big deal and he is more than happy to take care of it.  The truth is, I never cried until I hung up after speaking with my dad.  At that moment, it hit me how horrible it will be for him to clean the mess up and the tears started and have been coming off and on ever since.

The strange thing about me is that I have no problem opening up about what is troubling me here in my blog yet on the MS RANT page, it is more difficult for me to do this.  But why?  That particular page was created specifically for MSers to RANT OUT LOUD about whatever it is in their lives that is troubling them, especially when it comes to their MS, yet it is hard for me to do so.  I even posted this sentiment in the room and a few of my online friends encouraged me by saying they were there for me and I should just let it out, so I proceeded to share what had happened.  I wasn't embarrassed to let everyone know, but rather I was feeling defeated and wasn't sure if it was the right moment or not to share my little ordeal.  In the end, I'm not sorry I shared what occurred as it's not uncommon with those of us with MS to have this happen to them.