Thursday, July 25, 2013

Carnival of MS Bloggers #145

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

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:
That's fine by me!

This concludes the 145th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 22, 2013. 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, August 20, 2013.

Tuesday, July 23, 2013

Can RA Cause Changes in Your Voice?

According to a new literature review in the journal Autoimmune Diseases, the prevalence of laryngeal symptoms of RA has risen from up to 31% of RA patients in 1960 (Lawry, 1984) to 75% by the end of the 20th century (Hamdan, 2013).  At least a portion of this significant increase is likely due to increased awareness and better clinical diagnosis.

Symptoms of larynx involvement caused by RA include odynophagia (painful swallowing), foreign body sensation, dysphagia (difficulty swallowing), sore throat, lump sensation in the throat, change in voice quality (e.g. hoarseness, breathiness, vocal fatigue), referred otalgia (earache), and respiratory symptoms (e.g. shortness of breath, decreased exercise tolerance, stridor, dyspnea, respiratory distress). In rare cases, patients with RA may also present with symptoms of croup.  Patients may also be asymptomatic.

Read this post in its entirety:
Hoarseness and Shortness of Breath: Is Your RA the Cause?

Thursday, July 11, 2013

Fighting Heat Sensitivity on Vacation

Summer time is in full swing here on the East Coast.  We’ve had temperatures in the 80’s and the grass is growing like weeds.  Actually we do have some weeds where there shouldn’t be since we’ve been getting tons of rain during the past month.  Definitely not drought weather here.

But with heat and rain (and humidity) come annoying MS symptoms and potential pseudoexacerbations.  If you are heat-sensitive (like me), then a trip to the beach may be a challenge.  I’ve been very fortunate lately and my MS has been fairly quiet.  But in gathering supplies for the trip, I’m being confronted with the reality of what it may take to have a good time.

On the top of my list is a battery operated fan which I picked up on clearance at a department store years ago for less than $2.  Actually I bought two.  Best summer money spent ever.  They even came in handy when we lost power last year during to storms and thus lost air-conditioning for a few days.

Read this post in its entirety:
Headed to the Beach with MS

Thursday, July 4, 2013

RA Treatment: Triple Therapy

Rheumatologists will often begin their newly diagnosed patients on conventional DMARDs such as methotrexate (MTX), sulfasalazine (SSZ), hydroxychloroquine (HCQ), each alone or in any combination.  In fact, when combining the three drugs, it is commonly known as “triple therapy” and is often used as a step-up in treatment after trying MTX alone.

Triple therapy as a treatment approach to RA has received recent attention in the news due to a study published in the New England Journal of Medicine (NEJM) on June 11, 2013.  In this study, no significant difference in disease activity was demonstrated in patients who received triple therapy as compared to those who received treatment with etanercept + methotrexate. All the patients prior to enrolling in this study had experienced active disease despite methotrexate therapy alone (O’Dell, 2013).

In a similar study, the Treatment of Early Aggressive Rheumatoid Arthritis (TEAR) study, patients were randomly assigned to MTX monotherapy (alone), triple therapy, or MTX + etanercept with no significant difference in primary outcome (based on Disease Activity Severity DAS28 scores) between the latter two groups. However, x-rays did show more disease progression in the triple therapy group.

Read this post in its entirety:
What is the Role of Triple Therapy in RA?