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.

Fluttering; synchronicity

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.

Comments for this post.

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?

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

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?

Welcome New MS Bloggers

The Art of MS - Michelle

Running from MS - Julie

The Melting Mind of Multiple Sclerosis - Beau

Biking MS - Rex

In Search of My New Normal - Brooke

The Price Is Right Project: MS Blog -

BBH with MS - Meg

Healin' Balm - Neeli

Own Multiple Sclerosis - Sean

Needle Fatigue - Sunshine

Love My MS Life - Tricia

Life Well Lived -

Aan's MS - 

Call Me Bambi - Lynn

Overpowering MS -  Joe

A Little of Everything - Kelly

Debby's MuSings - Debby

My Life According to MS - Annettia

The directory of the MS blogging community can now be found on this page.

Carnival of MS Bloggers #144

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

Other Voices - Why Megan Supports the MS Society

by Rex Parker of Biking MS

The reason I support the National MS Society is well-known to readers of this blog. There are so many other compelling stories from people I'm connected with that I wanted to start sharing them with you...

The more of these stories I hear, I realize that their stories are mine and mine is theirs - we're all connected. So many families struggle to cope with MS. So many of us have lost family members and close friends. I hope that many of you recognize your own struggles in these stories, and get the same sense of support and camaraderie that I do. And a sense of hope that we can all work together to realize a world free of MS.

First off here's my friend Megan Nettleton, Community Relations Specialist for the National MS Society here in Boise. Megan's story is well-known within the MS community here in Boise. Megan is married to Chris Nettleton, the sports director for KBOI Channel 2. Chris suffers from MS, and has been a vocal and active supporter of MS Society events here in town, often lending his talents to emcee events. 

Megan and Chris

Megan's story is interesting to me, as she has a unique personal and professional connection to the MS Society. Here's her story, in her words...

“Before working at the National MS Society, I managed a bank for six years. I was never one to believe that anyone could truly love their job, but I am a believer now. My husband has MS, so it is an amazing feeling going to work and ultimately helping my husband every day! Who else gets to say that they get to do that? And now, it is not just about him anymore, but I now work here for all the amazing people I have met along the way, people like Rex! People that give so much of themselves without a second thought. That is why I support the National MS Society…because they support me!”

Me and Megan at "Meet Me Monday"

Just think about what most people do when faced with an MS diagnosis in the family. Sure, there are phases of anger, denial, depression, etc. But Megan not only went about arming herself with the knowledge she'd need to help and support Chris - but she also went to work for the one organization that will give them the most support during this ongoing fight. Megan has the unenviable task of being a one-person shop here in Boise, and I appreciate the positive energy and dedication she brings to the job.

And, to give you more insight into what Chris and Megan have to deal with, I swiped the following post from Megan's Facebook page. This is something she wrote when raising funds for her Walk MS Boise team...

"I was thinking today that a lot of you probably don't know very much of my husband's story and his multiple sclerosis diagnosis. And here I am asking you for donations quite a bit lately, so I thought I would share a little bit about his journey:

In 2008 his feet went completely numb. His doctor thought it couldn't possibly be MS because it was in both feet equally - so he went through a lot of testing, including electro-shock therapy on his legs, and muscle tests that involved shoving a 3-inch needle into his calves and moving it around to see if his muscles were working properly. Crazy, I know. Then he had an MRI and based on those results, his neurologist told him that he either had a brain tumor or MS. It is weird to say this, but luckily, it was MS and not a brain tumor. 

Because my husband is an all-or-nothing kind of guy, he went on a therapy immediately, which entailed me ramming a 3-inch needle intramuscularly into his thigh. And any of you that know my husband - he is majorly phobic of needles, but this was something we did for the next 2 1/2 years. And then one day he went in for a generic check-up, and surprisingly his liver numbers were way elevated. They discovered that the therapy had started to damage his liver, so he had to immediately go off of it. His only other option at this point for therapy: a DAILY shot. Great. But, my husband bravely endured it for one month, even though he had a severe skin reaction that caused his body to be covered in red, itchy, sore welts that never seemed to go way. 

What other choice did he have? Remember...all or nothing! 

It was then that the first pill for people with MS was released...TRIUMPH! He has been on it ever since, and has done very well! And this is all thanks to research...which brings me to my conclusion: please donate to our Walk MS Boise team to help raise money for research so more therapies may one day be available!"

Of course, the funds we are raising for Bike MS contributes to the same research that helped provide new therapies for Chris.

Thanks for sharing that, Megan! Look for more "other voices" stories over the coming weeks...

This concludes the 144th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 11, 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, July 9, 2013.

Comments for this post.