Monday, December 29, 2014

December 2014 Round-Up of MS News and Research

  • 3-Year results from HALT-MS trial shows clinical efficacy in RRMS
  • Almost half of MS patients experience tremors, according to patient reports
  • MS panel recommends expanding No Evidence of Disease Activity (NEDA) to include neuropsychological measures
  • Cinnamon holds potential as an economical and effective treatment for MS
  • Fecal microbiota transplantation (FMT) may improve MS symptoms
  • Other Studies of Interest

Read this post in its entirety:

Monday, December 22, 2014

Life with Chronic Illness is Unpredictable and Often Disorganized

When I first opened our bags after we arrived, everything was neatly folded and rolled up into perfect flat squares and uniform cylinders. It was easy to know exactly where everything was located as I was the one who packed our bags. But as soon as we began to pull out individual items to choose between the limited selection of clothing we brought, organization and uniformity dissolved.

Living with multiple sclerosis, or any other unpredictable chronic disease, can feel as though the neat pieces of life quickly become disorganized and disheveled. Symptoms can unexpectedly emerge and demand your attention. A relapse may threaten to derail your activities and send you looking for alternative solutions to situations which arise. Your neat life becomes a temporary mess.

On day four of our holiday adventure, the suitcase on the bedroom floor has become a mixture of folded organization and rifled through belongings. But for the most part, we can still find what we want although it may not be where we thought it had been. We haven’t yet reached the point where we’re asking each other, “Honey, have you seen [insert description of desired item]? I can’t find it. It was right here yesterday, I thought.”

Read this post in its entirety:
Living Out of A Suitcase

Wednesday, December 10, 2014

Multiple Sclerosis Without Evidence of Demyelination?

People who are in the process of being tested for multiple sclerosis often have many questions. Some of the most common questions surround the subjects of MRIs and lesions. Magnetic Resonance Imaging (MRI) is a powerful tool used to help diagnosis MS as well as measure disease progression. Lesions are the scars caused by demyelination which can be detected by MRI scan.

There have been many occasions where people in the process of being diagnosed with MS ask whether it is possible to have MS and not have brain lesions. The short answer is an unequivocal YES.

When I first experienced blinding optic neuritis in 2000, the neurologist ordered MRI scans of my brain. The results showed inflammation of the optic nerve, but no detectable lesions in the brain. Thus I was not diagnosed with MS at that time.

Five years later, when I was undergoing MRI testing of both my brain and cervical spine, lesions were seen in my neck. But my brain was still clear from lesions or atrophy. We only had to wait a few months until additional lesions showed up in my cervical spine and an official diagnosis was made.

Eventually the smaller lesions in my spine grew together to form one large lesion that spanned from the C4 to C6 vertebras. At the time I switched from my original disease-modifying therapy (Copaxone) to a totally different treatment approach (off-label Rituxan), I was hoping to avoid developing even larger lesions in my spine as I was definitely experiencing increased symptoms and relapses.

After I had been on Rituxan for a year, my MRI report indicated stability in lesion load, meaning that I had not developed any new or larger lesions. Follow-up scans two years later were stable, without evidence of new or worsening lesions, once again.

Another two years have past and I’ve just recently undergone MRI exam to determine two things: 1) How is my MS is doing? and 2) Is my current treatment continuing to be effective? What follows are the radiologist’s reports following the recent MRIs.

Read this post in its entirety:
Living with MS: No Evidence of Demyelination

Tuesday, December 9, 2014

Winter Survival Tips

Surviving winter is about more than keeping warm taking extra pain medication with you live with RA, it is about being proactive and keeping ahead of the dangers and/or negative effects of winter.

Gloves vs. mittens. 
Avoid gloves that are too tight as they can restrict blood circulation and aggrevate Raynaud’s syndrome. Consider wearing mittens instead. Mittens allow your fingers to warm each other and provide extra room in which you can insert disposable “hand warmers” to keep arthritis joints warm and toasty.

Too easily, people can become less active during the winter months; however, immobility works against RA. Muscles contribute to the strength and stability of joints and need regular activity to stay healthy. Stretching and gentle range of motion exercises are essential. Exercise can decrease RA pain by keeping joints and cartilage healthy, while also helping to reduce symptoms of depression which are common during the winter months.

Heated pools are good.

Clear snow and ice.
To prevent frost from forming on your car’s windows, spritz the outer surface of the window with a mixture of 3 parts vinegar and 1 part water once you are done with errands for the day. To make snow shoveling easier, spray your shovel with aerosol cooking spray beforehand to help the snow glide right off.

Stay safe.
Wet conditions of winter can be treacherous and we want to avoid falling to reduce the risk of injury. Wear sturdy, supportive shoes with good tread (sometimes tennis shoes are the worse shoes to wear on slippery surfaces) and try to avoid walking on ice. You may be better off walking through fresh snow, providing natural traction. Also, ask your doctor about obtaining a ‘handicapped’ parking permit to allow you to park closer to your destination and consider using a mobility aid such as a walking cane for the added stability.

Rest up and relax.

Hydrate and moisturize.
Drink plenty of water to keep your body hydrated from the inside out. Protect your skin by keeping it moisturized. As a musician, it is important that I keep my lips, part of my playing instrument, soft and supple by locking in moisture. I like to use plain vaseline or A+D® Original Ointment as Chapstick makes my lips feel dry.

Avoid getting sick.

Take medication as prescribed.

Have fun and watch for longer days to come.

Read this post in its entirety:
Surviving Winter with RA

Thursday, December 4, 2014

Carnival of MS Bloggers #163

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

by Bill Walker at MS and Beyond

When I think about myself as an individual in this lifetime experience, I always have to separate my reality, into two unique pieces which quite simply is a body and a soul. And strangely enough this is of great comfort to me when I start to think about my Multiple Sclerosis diagnosis. I understand that MS is a physical (body) ailment that has little to do with the soul part of my incarnation beyond being a lesson on learning compassion and love. I’m sure that sounds like something that should be significant to my spiritual growth overall, which it is, but I take great comfort in knowing that on the day I cease to exist in the physical plane is also the day that MS ceases to be a part of my continued existence, simply stated if I learn my lessons well enough, I can move beyond Multiple Sclerosis and never have deal with it again as far as I’m concerned.

Have you ever heard someone with MS or Parkinson’s or Cancer or any devastating disease say that it was the best thing that ever happened to them before? I can assure you that you didn’t hear it from me but I have come to understand what it is they are referring to when they make such a statement. After you can move yourself beyond the, why me phase, you start to see the world in a completely different manner. It’s like coming out of a deep all encompassing fog where you can see the world with eyes that no longer tune out a deeper compassion for the human experience, in short, you learn to love on a much more profound level then you ever thought you could. It makes almost everything that most people worry about in life seem incredibly insignificant from that point on. And if it took my getting Multiple Sclerosis to learn that, then I have to consider the possibility, that though I’m not really happy that’s what it took, perhaps it was worth the experience to achieve that overwhelming spiritual growth that is occurring within me.

And then it all starts to hit you just how petty most of what our race seems to think is important in this world. It’s not about amassing great wealth, or having the biggest house, or the power to influence other peoples lives just because you can. It’s ultimately about compassion, truth, and the willingness to help everyone else around you to find peace in their own existence.

And most of all, it’s about finding your own personal faith in who and what you are, and sharing that with everyone else!

I’m dedicating this blog entry to a person that I didn’t know all that well, but I wish I had. When I met her she was in the advance stages of Progressive MS and little did I know at the time that this would be almost prophetic since it was twenty years before my own MS diagnosis. She was one of the kindest and gentlest spirits that I have ever met never once complaining about the hardships of her own life which were extensive by any normal standards that most of us experience. However, she left behind her spiritual compassion that will be shared and passed on by each of her four sons, John, Steve, Bill, and Dave. She brought the light of God into this world and it is only right that this light be shared by all!

Camille Marie Kelly
Born: 11/27/1932
Passed: 1/10/1995

This concludes the 163rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 1, 2015. 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, December 30, 2014.