Carnival of MS Bloggers #119

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

MS Poetry and Public Profiles

Ode To My Left Leg 

by Janie at PasstheMSplease

I really miss my left leg

It’s been so good to me

It seems that it has run its course

It’s dead as it can be.

I know I ask a lot of it

Through each and every day

I thought that I was good to it

I don’t know what else to say.

I know I bumped it into chairs

The walls, the desks, the drawers

But lately we have done just fine

And stayed off the cold, hard floors.

Maybe I have asked too much

To try and walk like others

But I have not one single time

Been jealous of another’s.

I love you, I can tell you now

‘Though you seem not to care

Although this love is with the left

A love I have to share.

I hope that your vacation time

Will be short and you’ll return

Please don’t stay long, and hurry back

For your presence I still yearn.

And so until that happy day

I’ll hobble on one leg

Please hurry home, I miss you so

I really HATE to beg!!!!

Conversation on d Boat

by Stax at Multiple Sclerosis & Me

i hadda preface this post by giving a little history.  I guess that most people are somewhat curious, so alot of times, i'll be out and about and someone will ask me what happened or what's wrong.  Other times, the question is "did u have foot surgery, or did you hurt your leg?"  When i'm asked those type of questions, my standard answer is, "I wish i had surgery (or was injured) because that would mean that i'll heal...no, i have Multiple Sclerosis," and the conversation will either stop there (sometimes, i can tell that the person is a little embarrassed (maybe because they wished they weren't so fas - not that it bothers me?) or go on.

so...Saturday was a boatride on Lake Lanier.  We are in the middle of a heatwave - the high was 106 degrees, so even though i was feeling somewhat alright (sitting in AC in the car), my body was not.  J carried me to the boat - as the people in the south say, "Bless his heart" because it wasn't a short walk (he actually split the distance in 2 and took a lil rest in between) and then even when we got on the boat, KI took me up the stairs - i'm still a little unsure of how he made that happen.  so in other words, ALL the passengers knew that obviously, there was something "wrong" with me. 

Anyhoo, so we set up my chair and get situated and i'm sitting trying to get cool and this chick comes up to me an introduces herself and the conversation goes like this:

blah blah blah

Chick, "So...did you have back surgery?  what's wrong?"

Me, my standard answer, "no (remember my
little history)...I have Mulitple Sclerosis" (I always say the whole
thing because i'm not sure how many people actually know what MS is)

chick (really enthusiastically): "Wonderful!!!"  

Me (in my head): eh?  really?? u not serious are u???  out loud: (not a damn thing - good thing too)  I think i was a little taken aback

she then went on to talk about how it was great that i was out and enjoying the boatride and "taking a wine" as only i can and it was refreshing to see that i wasn't letting it keep me back.  oh, okay...thanks :-)  but i just couldn't believe it when the 1st word out of her mouth after being told that i have MS was, "WONDERFUL".  LOL - i had to give her a bligh after she continued.

Stop Horsing Around with MS 

by Laura at Inside MyStory

Did anyone else catch the recent chat on Fox News about Ann Romney, and her Multiple Sclerosis? Normally I would not watch Fox News, but we were staying with friends on a trip and they had their television tuned to Sunday House Call.

Of course I paused to listen to this story because of the topic, and they included a brief part of an interview they had done earlier in June with Ann Romney. I know she has come under much criticism recently about her portrayal of MS, the resources available to her, and all the other baggage that comes with being a high profile public personality. I have nothing to say about her personally, because that is a lesson I learned very quickly with MS – we are all so different but yet the same in living with this disease. I hope her MS stays in remission forever, just like I wish well for every one out there who lives with this MonSter, and this blog is not about her.

What I do want to talk about is this glaring example of how little some medical experts know about MS and the way it is portrayed in the media. Up first for this report was Dr. Marc Siegel, an internal medicine doctor and associate professor at New York University (NYU) Medical School. He was also the person who did a lengthy sit-down interview with her in mid-June about her MS.

In his brief few minutes of air time, there were several points he made that had me screaming “no!!!!!.” He talked about the disease modifying therapies available and said they all have serious risks including Lemtrada, which causes problems with platelets and that another MS drug causes encephalitis. For the record, Lemtrada is not available to us even though the idea of a few IV treatments and then skipping it for a year is appealing; Lemtrada has only recently been delivered to the U.S. Federal Drug Administration and it’s European counterpoint for approval.

Encephalitis from an MS drug? I am guessing Dr. Siegel was referring to progressive multifocal leukoencephalitis that is a rare but documented problem with Tysabri. He threw the phrase out there in association with treatment that makes it sound like a regular problem, and I wish if he was going to throw these possible complications with treatment out there, he would take a moment to discuss the risk /benefit decision we all face.

It wasn’t enough that he was misleading and spreading fear about the drugs. He then went on to talk about Ann Romney’s use of horseback riding for her therapy and talked about the value of the LOVE between a horse and its rider. He said nothing about the therapeutic value of RIDING a horse. Hippotherapy is an approved therapy for many different disorders; for people with MS, the movement of riding a horse mimics the human walking motions and improves core stability. The body responds to riding a horse with improved balance, stronger core muscles and can even reduce spasticity. Just like petting a dog will lower blood pressure, there probably is a benefit to bonding with a horse, but the therapeutic value for people with MS is much more than love.

The female anchor of the program did interject that “horses are magical” and maybe that’s my problem- if I just believed more in magic and got a pony, my MS would disappear.

More than once, Dr. Siegel mentioned how Ann Romney has beat MS. Wow, that’s an impressive statement because the last I checked, no one has beat MS- we merely learn to live with it. He also credited her faith and being strong as the key to her beating MS. I can’t help but wonder how that makes the many people with MS who I know who haven’t beat MS, despite being strong and faithful.

Perhaps the most confounding statement Dr. Siegel made was that often the best decision to make for patients is to not treat their MS, and that it is often better to wait because of the side effects of the MS drugs. A louder scream comes from me on this one…… argh!!! The most recent recommendations of the MS Consortium of Research Centers (MSCRC) and the FDA approved guidelines for these drugs, is to treat people with MS immediately with their first symptoms – clinically isolated syndrome (CIS) is recognized as the first sign that a person may later develop MS. The earlier the treatment is begun, the better the odds that the disease progression can be slowed. If a person is beyond CIS and has MS, it would be unthinkable to not offer that patient a treatment option.

The second doctor to speak about Ann Romney’s MS, was David Samadi, MD, also from New York, who is the “Chief of Robotics and Minimally Invasive Surgery at Mount Sinai School of Medicine,” according to the Fox website. I had hoped that this doctor would present solid information on MS, but at the time I did not know his credentials or I wouldn’t have held that hope. MS is far removed from the black and white world of robotic medicine.

Dr. Samadi stated that MS is diagnosed by the evidence of plaques showing on MRI’s and through the analysis of the cerebral spinal fluid (CSF) from a lumbar puncture. He completely ignores the documented fact that not all CSF will be positive and about 15% of people with MS have negative lumbar punctures. The same is true for the MRI imaging – it is very much possible to have MS and not have visible lesions. There are a number of factors that go into this, including low powered MRI’s, incorrect MRI software application, or radiologists misreading the MRI images. There is growing evidence that MS lesions/plaques are not confined to the brain’s white matter and may be lurking in the gray matter as well. High powered MRI imaging is being used to see if perhaps this is where MS hides in the early stages. He said nothing about the clinical neurological exam or the role the patient’s history plays in the diagnostic process.

He echoed Dr. Seigel’s view that Ann Romney is a strong woman and because of that and her faith, she has her MS in control and she should be a role model for the rest of us living with MS. Unfortunately few of us have her resources so it is somewhat difficult to shadow her coping style.

As a final note, he proclaimed that since she only has Relapsing Remitting MS, she just has the mild type of MS and she will do well. Can you hear me letting loose with a primal scream at the TV at this point? Obviously he doesn’t know the statistics of how many people with RRMS will move on to secondary progressive MS (SPMS) and accumulating disability.

If you want to practice your very own screams at the screen, you can view the Fox News discussion at

http://video.foxnews.com/v/1714450639001/ann-romneys-battle-with-multiple-sclerosis/?playlist_id=930909755001

This is not the first and probably not the last time, where the talking heads on TV will get it wrong explaining Multiple Sclerosis. Dr. Nancy Snyderman , the Today Show medical expert, usually makes me scream at the TV as well; most recently she told viewers that men having MS is rare. But what should we expect from a doctor trained in oncology or these other doctors who deal with robots and internal medicine rather than neurology? They may be wonderful in their own fields, but they need to not present themselves as experts on a topic that they haven’t mastered, and judging from the false statements they make, maybe they even skipped the neurology rotation in med school.

Would it be too much to ask the networks to invite a real expert to explain MS? At least neurologists understand that living with MS is more complex than having religious faith, just wishing it to go away, and loving a horse.

This concludes the 119th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on August 2, 2012. 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 31, 2012.

Thank you.

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