Before the Doctor's Visit

If you live with MS, you will see the inside of a doctor's office more often than you might prefer. It is part of living with any chronic disease. My neurologist likes to see his patients at regular intervals and the longest I've gone between scheduled appointments was six months. Visits were much more frequent during the first year.

A positive benefit of having so many appointments is that I've developed a system of preparation which works well for my doctors and me. Ahead of time I create a “doctor visit sheet” on my computer which is then printed out to take to the appointment. It helps me to keep track of what's going on with my health, gives me a dated record, and helps my doctor in giving me the best care possible.

Creating the doctor visit file:

Using your word processing software, create a new file and label it with the name of the doctor and the date of the office visit, for example “Simsarian, 04 April 2011.” Save that file in a new folder labeled “Medical Visits.”

What information should I include on the doctor visit sheet?


Read this post in its entirety:

Preparing for Your Doctor's Visit

RA and Antibiotics

In honor of Get Smart About Antibiotics Week, November 14-20, 2011, we are delving into the subjects of bacteria, viruses, appropriate use of antibiotics, and avoiding infection.

Bacteria and Antibiotics

Before the discovery of penicillin in 1928, bacterial infections were a major cause of death.  Bacteria are single-celled organisms which can live both inside and outside of the human body, including on the surface of non-living objects.  The bacteria, streptococcus pyogenes which is responsible for strep throat and some skin infections, was previously the cause of half of all post-birth deaths before penicillin (an early antimicrobial medication) came into common use.  The bacteria, staphylococcus aureus, was fatal in 80 percent of infected wounds.  Tuberculosis and pneumonia bacteria were also horribly dangerous.

Antimicrobial medications, or antibiotics, have saved countless lives during the past 80+ years.  However, when they are not used appropriately, bacteria can become resistant to medication.  An example is the frightening methicillin-resistant S. aureus bacteria, also known as MRSA.  As a bacteria becomes resistant to one medication, a stronger antibiotic must be developed to attack the evolved bacteria.  Improper use of antibiotics is how “super bugs” are created.

Read this post in its entirety:

Antibiotics, Bacteria, Infection, and Rheumatoid Arthritis

Carnival of MS Bloggers #101

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Unexpected Surprises

Sticks

by Laura of Inside MyStory

Have you ever done something that you felt was a pretty useless effort but you did it anyway because it was the right thing to do, never dreaming that you would get a better outcome than you should dare hope for?

Fourteen years ago I took the time to plant three white pine saplings in the back yard.  These were those free trees that are given to school children to take home and plant as part of Arbor Day celebrations. Trees is a liberal use of the word, they barely looked  like  trees, they were more like a piece of greenery that could be used in a floral arrangement than something that should be planted; a  little tuft of pine needles on the end of a stick. The fine roots at the end of those sticks were barely visible.

Rather than ignore them in their sad state, wrapped in a plastic bag, I followed the attached instructions and dug shallow holes in the back of my yard  for these three sticks.  Much to my surprise, all three of them took root.  Had I known they would actually grow, I would have planted them differently, but I had assumed they wouldn’t thrive in my care and dug three holes about three feet apart .

A few years pass, and to my surprise all three sticks survived but  I had  planted them too close together, and told a good friend to come and take the small one away to her yard, to give the others the room to grow.  She made the move while I was at work, and to my dismay she had taken the wrong tree.  Instead of the runt of the group, she had removed the middle sized white pine, a tree that had already grown to  a height of over 6 feet.

That middle sized  tree didn’t survive the shock of the move to her yard and quickly lost all its needles and was once again just a stick, just a lot taller than its humble beginnings.   The 2 foot runt was still in my yard, in the shadows of the biggest tree, which was quickly hogging all the sunlight and water.

Looking out in my yard today, I can still see that runt, struggling to grow in the shadows of the other sapling, which has now reached a height of almost 40 feet and is a magnificent specimen.   The runt is merely a dwarf version of the big tree, and has the same perfect shape in all of its now  8 foot glory.

They were the same when they went in the ground, planted in the same location, and given the same care.  I could not have projected this surprising outcome or tell you why one thrived while the other remained fairly static.

I didn’t expect these sticks to grow, but it provides me a reference as to how sometimes I go through the motions anyway of what is expected, and I end up being pleasantly surprised.

Looking at these two trees remind me of why I continue to take my daily disease modifying drug.  I’m not sure that those daily injections will ultimately make a difference in the course of my disease.  But I keep planting that needle, just in case I’m wrong. And I’m open to being pleasantly surprised.

A Letter

from Travelogue for the Universe

from the clinic,

nearly left it

there,

on the table,

by my diary,

of my shots

i have had

for

4 years

now,

but the letter,

had a feel there,

out of place,

i had a

feeling,

it was not a simple

letter

but a message

that

my study

will

end soon.

I told

my patty,

my sweet voice

who monitors

my

progress,

that

it was

weird,

being told after

4 years

that this will all

change,

somehow.

She said,

everybody felt

that way.

Seemed like I was just getting used to it,

having more faith that this is the right

regimen.

Knowing the

funding

has a lot to do

with

well,

everything,

and politics,

is right up there too,

and when we feel

powerless,

it is because

we

are.

stay tuned, you know as much as i do.

will find the results of my study in January

and discuss next steps.

4 years no exacerbation,

hope they keep me on what i am on,

whatever that turns out to be.

mary

Secondary Progressive MS, When MS Retires

by Diane J Standiford of A Stellarlife

I used to think secondary progressive MS was the worst thing that could happen to me. I mean, after all, if you start at relapsing remitting, the progression to secondary is the end of the line---all downhill from there. Well, that may be true, but I'm not living it yet. In fact, I feel better than I used to.

Back in 1990, after my initial diagnosis, my hopes were on being that 50% who never would rely on a wheel chair. It seemed, for 15 years that I had made it! But, alas, here I sit, power chair at my side---always. Oh well, you takes your chances. I refuse to accept the whole "secondary progressive now you are just a downhill headed snowball" thing. Um, I don't roll like that.

In truth, some functions have come back that I thought were gone forever. Plus, there is a certain tranquillity with not waking up each day and finding a relapse starting. As my neurologist asked me 5 years ago, "When was your last relapse?" I couldn't remember, in fact, without all the blog and Face book reading I do, I'd probably have to really think hard to recall what they were like. Much of the uncertainty of MS is now gone. Here I am. Being 54 leaves me with more health issues to worry about than MS.

Like cancer. Had it once, don't want it again. Liver problems. Had them once, don't want them again. Diabetes runs in my mom and a brother (both of whom I look just like), don't want that.

Then there is mom's Alzheimer's---like a shadow that I see every so often, hanging around...certainly don't want that. My point is that MS has crept lower on my health concerns list. Secondary progressive can do that for ya. It has shown certain limitations, but I will always continue to try and erase those. Bottom line: there is so much more I CAN do than I can't do. My focus is clear for the goal of quality of life.

Back in the '90s, I was working at a job I loved, walking hills of Seattle every day, driving, but my quality of life was pretty sucky. I would never have admitted that then, because who KNEW where I might be in 10 years, but now I can say---it was really difficult.

I feel bad for people diagnosed with MS so early now, I do. Those years BEFORE my diagnosis, almost 8, where today a MRI would have pegged me, were terrible and scary. But they passed and newly diagnosed people now seem so freaked out! (As I would have been. I would never have gotten my job with the city that afforded me such great health benefits. I might even have headed back to UGH Indiana. So MANY things I never would have felt able to do, chances I would never have taken.) Without a CURE, early diagnosis just seems more of a trouble maker.

If I found out today that I will get Alzheimer's---what good will it do me? NONE. I already play all the brain strengthening games, eat the healthy foods, exercise; not a future I'm worrying about.

Secondary progressive MS. SPMS. There are worse things to have.


This concludes the 101st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 22, 2011.

Thank you.

Comments for this post.

Educating for RA Awareness

Nobody would argue that we need more rheumatoid arthritis awareness.  I admit that I didn’t know much at all about RA until I was being diagnosed with it.  Why should anybody know much about RA until it touches someone in your life, family, friends, or public figure?  No real reason unless we’re in medicine.

If you read forums or blogs discussing RA, you will certainly have come across posts which focus on “what not to say….” to patients, or which focus on what bugs us, as a community, the most when others might say it during a social interaction.  I read these posts and can sympathize with those who are frustrated, but honestly I have not encountered the same level of annoyance or anger which is often expressed.

Here are a couple hypothetical scenarios to contemplate:

Scenario #1

You and a friend are in your early 20’s.  You’ve met for coffee and are chitchatting about life - boys, jobs, heatlh.

Read this post in its entirety:

RA Awareness: Be Patient with Your Friends, Educate, Don't Hate

What does Ehlers-Danlos Syndrome have to do with MS?

When researchers, observers, and hypothesizers begin to make connections, it can become very interesting.  I recently came across listings for research studies which involve patients living with one of two disorders: multiple sclerosis and Ehlers-Danlos syndrome. 

What is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) is the name given to a diverse group of inherited connective tissue disorders involving a genetic defect in collagen.  Ehlers-Danlos syndrome, characterized by joint hypermobility, skin extensibility and tissue fragility, can affect the skin, joints, and blood vessels.  The prevalence of EDS is estimated to be approximately 1 in 400,000 in the United States, but mild cases may be under diagnosed.  In comparison, prevalence of MS is estimated to be approximately 90 in 100,000 in the United States according to the Cleveland Clinic.

There are 11 variants of EDS which have been identified to date, each with differences in genetic, biochemical, and clinical presentation.  The specific collagen defect has been identified in only six of 11 variants or types of EDS.  Overlap between variants is common and more than one third of persons with EDS do not clearly fit into a single type.

Read this post in its entirety:

Ehlers-Danlos Syndrome and MS: Is there a connection?

What's the difference between awareness and obsessing?

I thought this was particularly funny.