Found this amazing post – enjoy

March 20th, 2012 by Laina Turner

 

See/read more great things like this on the blog Stuff Could Always be Worse.

Study finds exercise, sunlight treat MS

March 15th, 2012 by Laina Turner

 

A decade-long study into treating multiple sclerosis has found lifestyle changes can slow its progression and in some cases remove the symptoms.

Melbourne researchers found that a low saturated fat, plant-based diet, exercise, sunlight exposure and relaxation techniques can improve the health of sufferers.

Study leader Professor George Jelinek says those lifestyle approaches, along with drug treatment, can improve quality of life for those with MS by 20 per cent.

He says the finding is quite a breakthrough.

“Some people didn’t get better and some people didn’t adhere to the lifestyle recommendations and some people have got worse, but conversely some people have got very dramatically better so that some people have had complete resolution of symptoms and are perfectly well,” he said.

“That’s just a fantastic outcome for the people concerned.”

Professor Jelinek says the next step is to investigate exactly what factor or what combination of lifestyle changes made the difference.

“We don’t actually yet know what made the difference to these people,” he said.

“The next stage of our research is to get on and look at exactly what factors explained that improvement.

“It’s remarkable to us that we had such a significant improvement for people when the usual course should be progressive deterioration.”

Read original post here.

MS Awareness Week Day 1: MS Kills Connections by Trevis Gleason

March 13th, 2012 by Laina Turner

Read original post here.

Today marks the beginning of MS Awareness Week in the United States — seven days of awareness adverts in print, on TV, and over the radio. If we all do our jobs well, everyone will have heard something about multiple sclerosis this week.

As part of the kick-off to MS Awareness week, I’d like to announce that we’ll be posting daily blogs this week. Every day we’ll be covering one topic or the other as it relates to living life with MS and sharing stories which will help others understand. Today, we’ll begin with a new awareness campaign announced by the National MS Society.

“MS Kills Connection — Connection Kills MS”

Some early reviews think the work “kills” right next to MS is a bad idea. I understand the concern, but we’ve been speaking the stark truth about multiple sclerosis in the pages of the Life With MS Blog for nearly 6 years (in fact we have an anniversary this week — how fitting!) and I’ve been begging for some honest language in the MS lexicon for some time. The Society’s willingness to print my “Unspeakable Bits” Blog was not an easy decision for many, but it was a no-brainer to the senior leadership and our third post will be up soon.

Multiple sclerosis does kill connection — connection between my axons and the neurons which fire signals in the brain, connection between my brain and spinal cord, connection between my brain and my body… connection between my person and my community. MS kills connection!

With the new site MSConnection.org, a new social media type outlet has been made available today.

I was part of the beta test run for MS Connection and find that it will be an interesting and, eventually, useful tool to keep in touch — real time — with events, activities, news, and research. Through MSConnection.org, we can hear about important legislation being acted upon (or not) in Congress and our state legislatures. We can read up on other peoples’ successes (and failures). We can join a group conversation, keep abreast of famous people living with MS, and much more.

MS Connection is intended to be a platform from which we, the users, take the connections from one place to the place we need them.

I’ve started a companion group on the site called “Life with MS” — I mean, what else would I call it, right? You can join the group after you register and set-up your profile. It’s easy and I’m already reading things from people who get my MS!

It may seem like another “thing” to do and with which we have to keep up. It may indeed prove too much for some of us to keep up with, but I’m willing to give it a try. I look forward to “meeting” some of you on this new networking site.

One last little thing to share today: A new video has posted which can help some people to understand the disease a bit better. “MS Impacts All Of Us” may be of use to those of you who wish to share during this MS Awareness Week.

Tomorrow, we’ll post about an exciting research webcast that you can join from NYU at 9:15AM Eastern Time (they apologize for the early start, but I’m sure it will be ready for downloads soon after). We’ll make sure the post is up bright and early!

Wishing you and your family the best of health.

Cheers

Trevis

 

Read original post here.

Post from the blog Living Day to Day with Multiple Sclerosis

February 10th, 2012 by Laina Turner

Original blog posted here.

 

Being diagnosed with Multiple Sclerosis was very hard. I was diagnosed in March of 2007, after a very long and rough exacerbation. Now looking back, I would say that the depression first started. If you don’t see it happening, you don’t get help. As the years have gone on so have the pains and symptoms. I spent more time in bed and unable to do all the things I used to do and even wanted to do. If I had a good day, I would push myself and then suffer for days. Heck, who am I fooling, I still am going through that. It wasn’t until last Fall that I started realizing how distant I have become from everyone. The Holidays were fast approaching and the worse I was feeling. I was waking up sick, the pain increasing, was crying from the second I woke up until I went to bed, and much more. It wasn’t until the day that everyone was leaving the house. I started shaking, felt like I was going to be sick, had this horrible sensation of fear, and then started crying. Are you kidding me? I am afraid of being alone? I felt like I was losing my mind. What is wrong with me?

I have always refused talking to a therapist, mostly because there was nothing wrong with me. Or at least I didn’t think so. After a few more episodes of this craziness I had to make that dreaded call. By the time I went in to see him, it had become even worse and was happening everyday all day long. While talking to him and answering his questions, I actually was becoming more and more embarrassed with my answers to these questions. I am the type that avoids calling the Dr’s until a lot has built up, mostly because after being diagnosed with MS, I find that everything would get blamed on MS. When I do finally get the nerve to call and go in to see them, usually the issue is at the extreme and then I want fixed… I WANT FIXED NOW!!! I guess I forget that the issue(s) may have been fixed fast if I would have gone in but I let it go months and months. So, of course, I went to the Therapist, answered the questions, and expected him to fix whatever is going on.

It didn’t go that way. I am listening to him talk and it was like a Charlie Brown’s Cartoon. “Wait… What did you just say”? The Therapist said it again. “You are having Severe Anxiety Attacks, You have Major Depression, and you are suffering from Agoraphobia this is very common in people that have been very sick for a long time. Part of this can be due to the MS”. I kind of giggled, in disbelief or maybe embarrassment, and then hit him with my normal response. “OK, so how do we fix this? Christmas is in 3 weeks and I have to be around all our family and friends. It’s been over 3 weeks since I left the house and the idea of being around everyone is causing this to get worse and worse.

 

Then the dreaded words came out… “This has been going on for years, this will not be an easy or quick fix. How bad do you want to live, keep your family and friends, and most importantly… be happy and live your life again”? Of course I choose to get my life back and most importantly be happy. I miss the “old me” I feel like I have lost me and people expect so much out of me and don’t understand or don’t care. I worry about everything and everybody, I care so much about others and continue to get hurt everyday. I never speak my mind, out of fear of hurting other’s feelings but they do it to me all the time. I wish I had the switch that other’s have to make me not care. He responded with ” You are You and You can’t change the way other’s are and how they will treat you. All you can do is learn to find ways to cope with being hurt, let down, disappointed, etc.. If that is the life they choose to live to make them happy, that is their choice. All we can do is work on what makes you happy and how to cope or handle those situations”.

This is the beginning of finding “ME and My Inner Happiness”. Does anyone else feel the same way or go through the same battle as me? Have you ever wondered “Why Me”?? Well, I always do and always come back with the same answer and that is… To help others. As hard and embarrassing as this is to me. I will journal my Journey as often as Possible. I get through life by helping others and I hope this will help others. Feel Free to Follow along and see where this journey leads… Hopefully to finding my Inner Happiness.

Living with multiple sclerosis by Sarah O.

January 27th, 2012 by Laina Turner

I suffer from Multiple Sclerosis. I suffer from a cocktail of other ailments that such abbreviations bring. But you never know what or which. You spend endless hours every week with new symptoms that could fit into other definitions. There is a concoction of medications. There is an assortment of supplements that promise good health. Is there ever hope. Never. Hope is about knowing that the disease will go away. Hope is for the foolish.

There is fighting. There is preparedness. And there is perseverance.

I must live as the capacitor that can store every iota of strength for my depleting years ahead.

I will persevere.

How do I begin to tell you my story? There is an ocean of words behind every one that I will write. I do remember that routine afternoon when things changed.

I was working on an art project on my computer when suddenly, I saw a strange grey blur around everything. We visited a number of ophthalmologists after this, only to be dismissed repeatedly that I was imagining my vision changes. Ultimately, the mind numbing headaches, the dimming vision and a lot of online help led me to believe I had optic neuritis. I felt pain when I moved my eyes, a pressure on my eyeball like it would explode and loss of colour; over the next few weeks my world became dimmer and dimmer. Ultimately, the edges around everyday objects began to separate, and I began to see two of everything.

After a painful wait, seemingly unintelligent doctors, we finally met a neurologist who told us about optic neuritis. Optic neuritis is inflammation of the optic nerve, which carries visual information from the eye to the brain. If the nerve gets inflamed, it damages the insulation around it (the myelin sheath) and may result in permanent vision loss.

That night, as my sister and I poured over the internet, we came across a website which warned that this is a fairly common symptom of multiple sclerosis (MS). I knew MS was something sinister, but nothing beyond that. The ground beneath my feet shifted. We shut the laptop and went to sleep. Unfortunately for me, as I bent my neck forward that night, an electric shock ran down my spine.

The Lhermitte’s sign, which confirms the neck part of the spinal cord has been affected by MS; the other shivers were my own. Knowing that something was wrong, but praying otherwise, I went in for my MRI. Lesions on my brain shined white on my MRI scans. They indicated scarring (sclerosis) in my brain where destruction of the protective myelin sheath had taken place. A further physical examination by the neurologist led to my diagnosis. I held his gaze when he told me. I accepted it easily enough. He must have put me in the box marked denial.

Learning about your disease is the easy part; living with it is a whole different monster.

The first step was to do something about the vision. I was put on intravenous corticosteroids, and gradually but surely the world came back into focus by my third dose. I learnt I had relapsing-remitting MS –  the good kind. Basically, my immune system was attacking itself and the protective layers (myelin) around my nerves were getting destroyed.

In medical terminology, this demyelination impairs the nerve functions of interpreting and receiving signals from the brain. Vague symptoms of demyelination in the brain sometimes begin long before the disorder is diagnosed. For example, tingling, numbness, pain, burning, and itching may occur in the arms, legs, trunk, or face. The sense of touch may be reduced. People may lose strength or dexterity in a leg or hand, which may become stiff.  Often the disorder slowly worsens, disabling some people, but life span is unaffected unless the disorder is very severe. Luckily for me, I would have periods of relatively good health alternate with episodes of worsening symptoms. As recovery during remission is good but incomplete, the disorder worsens slowly over time.

Since symptoms vary widely, sometimes people can go years before a diagnosis and therefore don’t receive treatment before much damage has already been done. There is no known cure for the disease. Patients are instructed to count on disease modifying agents that help prevent new attacks. As of 2011, six disease-modifying treatments have been approved by regulatory agencies of different countries, including the US Food and Drug Administration (FDA), the European Medicines Agency (EMEA) and the Japanese PMDA. The six drugs are interferon beta-1a (Avonex, Rebif), interferon beta-1b (Betaseron), glatiramer acetate (Copaxone), mitoxantrone (Novantrone), natalizumab (Tysabri) and fingolimod (Gilenya), the first oral drug available.  In Pakistan, Bayer Healthcare is providing a holistic solution by ensuring a consistent supply of Betaseron, home based nursing support for administering the injections, and physio-therapy. The drug is equally hard on the body, mimicking flu like symptoms to the extreme.

I took these injections for several months, then gave up. The drug was debilitating. In Pakistan, people who do not respond to Betaseron have to find ways to manage supply for other drugs which are not available through a dependable source. And doctors cannot help much further. Support groups are limited and mostly inactive. There is an MS support page for Pakistan on Facebook with 21 likes.

It is not that MS is uncommon in Pakistan. Infact researchers from Aga Khan University have just published data from the first in-depth study of multiple sclerosis in Pakistan, enrolling 142 patients. It is usually that people with MS don’t like to talk about it. The disease is hard to explain. There is little knowledge about it. Reactions may be hard to manage. Also, supporting other MS patients requires massive reserves of energy. People going through anger, frustration, denial, and depression make a hard disease harder to cope with. And so, many MS awareness months have passed silently by.

Living with MS is not easy. Unusual and sudden fatigue, numbness, tingling, a reduced sense of touch, pain or burning, itching, dim or double vision, weakness and clumsiness, difficulty walking or maintaining balance, tremor, uncoordinated movements, stiffness, unsteadiness, problems controlling urination and bowel movements, mood swings, inability to control emotions, mental impairment, memory loss, poor judgement and inattention are some of the varying symptoms of MS. Everyday life becomes challenging; an uphill climb. Planned events become harder to plan and predict.

I read up a lot but I was not ready for it; the heavy swing of a pendulum that will hit you each time with something frightening. I remember the first time my energy left me. Urgently and without warning, like being hit by a truck on a beautiful morning. Willing my arms to move, and my legs to listen; first lovingly, then angrily. The time when I could listen to the words of a loved one but could not put them together. Or the time when I got stuck in a moment with no idea about what had happened before and what was coming later. Living with crushing pain, yet interacting with people at home and work with a smiling countenance. Doing your how-do-you-dos, with endless pills.  Just keep going, says a voice. Going mindlessly at times. Wondering what it is like to be in another body. Sometimes the smiles run out.

How can you explain to someone, something that doesn’t have a fever, or that doesn’t bleed. How many times I have heard the words, “But beta, you look fine!”.

How do you explain to the loving and demanding relationships you have created around you?

The meter ran out today, I just can’t.

Original blog posted here.

Diabetic Mice Provide a Surprising Breakthrough for Multiple Sclerosis Research

January 6th, 2012 by Laina Turner

The team has discovered that when mice with Type 1 Diabetes are injected with myelin protein — the insulating material that coats neurons — they experience the periods of relapsing and remitting disability associated with brain lesions in humans. And for the first time, they’ve been able to monitor this brain lesion process using magnetic resonance imaging.

Dr. Frenkel believes his finding will lead to the development of more effective treatments for MS.

Read full article and more

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How I Found Out I Have MS!

December 16th, 2011 by Laina Turner

Tricia’s Story of Multiple Sclerosis

December 15th, 2011 by Laina Turner

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What it’s like to have MS – one person’s perspective

December 13th, 2011 by Laina Turner

Purchase The MS Project ebook on Amazon for 2.99

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What is Multiple Sclerosis?

December 13th, 2011 by Laina Turner