Multiple Sclerosis

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    MedicalNewsToday: Multiple Sclerosis

  • MP Argues Risk Sharing Scheme Not Fit For Purpose

    8 Feb 2010 | 3:00 am
    James Gray MP has argued the Risk Sharing Scheme has 'fatal flaws' and is 'hopelessly out of date'. James Gray MP, Chair of the All Party Parliamentary Group on MS, secured a debate on the Risk Sharing Scheme on Tuesday of this week. The purpose of the debate was to consider whether the Scheme has worked to benefit either people living with MS or the NHS...

  • Multiple Sclerosis: Blacks Have More Severe Symptoms, Decline Faster Than Whites, New Study Shows

    8 Feb 2010 | 12:00 am
    Fewer African Americans than Caucasians develop multiple sclerosis (MS), statistics show, but their disease progresses more rapidly, and they don't respond as well to therapies, a new study by neurology researchers at the University at Buffalo has found...

  • Gordon Brown Receives Prescription Promise 'Wake-Up Call', UK

    1 Feb 2010 | 9:00 am
    People across England will be joining forces to demonstrate their outrage at Gordon Brown's failure to act on his promise to abolish prescription charges for people with long-term conditions, by taking part in a simultaneous 'wake-up phone call' to No 10...

  • The Season Affects Multiple Sclerosis Risk

    1 Feb 2010 | 2:00 am
    Previous studies have shown multiple sclerosis (MS) patients are more often born in spring than in any other season, indicating that there is an environmental risk factor for the disease. A paper in the journal Neurology, reviewed for f1000 Medicine by Emmanuelle Waubant and Ellen Mowry, now suggests that this seasonal effect is mediated by the gene HLA-DRB1...

  • 3-Year Mission To Understand And Treat Neurodegenerative Disease

    1 Feb 2010 | 1:00 am
    Project A.L.S. (New York, NY) and the Robert Packard Center for ALS Research at Johns Hopkins University (Baltimore, MD) announced that they will partner on P2 ALS, a $15 million initiative designed to advance ALS (Lou Gehrig's disease) research exponentially over the next three years. Project A.L.S...
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    ScienceDaily: Multiple Sclerosis

  • Blacks with MS have more severe symptoms, decline faster than whites, new study shows

    6 Feb 2010 | 8:00 am
    Fewer African Americans than Caucasians develop multiple sclerosis, statistics show, but their disease progresses more rapidly, and they don't respond as well to therapies, a new study by neurology researchers has found.

  • Little pill means big news in the treatment of multiple sclerosis

    25 Jan 2010 | 11:00 pm
    A new drug for multiple sclerosis promises to change the lives of the 100,000 people in the UK who have the condition, say researchers. A major trial of the oral drug Cladribine has shown that it significantly reduces relapse and deterioration of the disease, and goes a long way to eliminating the unpleasant side effects associated with existing therapies.

  • Low vitamin D levels associated with greater risk of relapse in childhood-onset multiple sclerosis

    21 Jan 2010 | 5:00 pm
    Low vitamin D blood levels are associated with a significantly higher risk of relapse attacks in patients with multiple sclerosis who develop the disease during childhood, according to a new study.

  • Novel mouse model of demyelinating disorder

    20 Jan 2010 | 2:00 pm
    In a new study, researchers describe how mutation of a gene called ZFP191 leads to disordered central nervous system myelination in mice -- reminiscent of what is seen in human multiple sclerosis patients.

  • Modifying Neural Stem Cells Improves Their Therapeutic Efficacy

    27 Dec 2009 | 11:00 pm
    Stem cells isolated from the brain of adult mice (adult neural stem cells [aNSCs]) have shown very modest therapeutic effects in a mouse model of the chronic inflammatory neurodegenerative disease multiple sclerosis. But now, researchers have developed an approach to enhance the therapeutic effects of aNSCs in this model of multiple sclerosis, something that they hope might increase the chance that aNSC-based therapies might one day be developed for clinical use.
 
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    This is MS

  • Oral Therapy Laquinimod to Start Phase III Trials for RRMS

    The race for an oral multiple sclerosis medication took one further step today, when Teva and Active Biotech announced that they were going to begin the final Phase of clinical testing for their pill candidate, called laquinimod. This followed the successful conclusion of Phase II, as well as consultations with the US FDA. Drugmakers are cautious... Story continues, please click "read more"...

  • MS Walking Improvement Drug Gets FDA Help

    Most of the MS therapies in the drug development pipeline, or even available today, are targeted at reducing relapses and decreasing disability progression. Which makes Acorda Therapeutics'' Fampridine-SR quite interesting. In Phase III trials, it is targeted specifically at one particularly onerous aspect of the MS burden-- impact on walking ability. Acorda and the United States Food and Drug Administration recently reached an agreement on a pathway to getting Fampridine approved for this indication. In addition to a Phase III trial currently underway, Acorda will work with the FDA''s…

  • Daclizumab Shows Promise in Phase II Trial for Relapsing Remitting MS

    Just over a year ago, PDL Pharmaceuticals partnered with MS giant Biogen (Avonex, Tysabri) to bring a drug known as daclizumab through trials for MS. Daclizumab is today used for the prevention of kidney transplant rejection, under the marketing name Zenapax (r). The partnership seems to be bearing fruit, as the companies announced that Daclizumab hit its targets in its first Phase II multiple sclerosis trial. Please click ''read more''

  • Minimal Changes in Cognitive Function of Relapsing-Remitting MS''ers in a 10-year

    The question of cognitive decline as a result of MS is a serious one. If the ac*****ulation of physical disability is a hallmark of the condition, its affect on cognitive dysfunction is not always so obvious. In fact, in a recent trial for Copaxone (glatiramer acetate) observing cognitive scores, the placebo group improved just as much as the Copaxone-treated group over two years. Perhaps 2 years was too short to see a difference, so a new study observed a group of MS''ers over TEN years. Please click ''read more'' to see the rest of the story...

  • PML Seen with Rituxan for Lupus

    Our old nemesis, progressive multifocal leukoencephalopathy, or PML, has reared its ugly head yet again, this time in association with another of Biogen''s drugs, Rituxan. PML, if you recall, was implicated in the multiple deaths associated with Tysabri last year, leading to its temporary suspension. After much analysis and an unprecedented patient board hearing by the FDA... Story continues, please click ''read more''
 
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    Health Central: Multiple Sclerosis

  • Couple's Love Survives Through 'Sickness and Health'

    8 Feb 2010 | 1:06 pm
    Tom and Vera Forkner have been married for 30 years, and for 12 of those years, the couple has been living with Vera's diagnosis of multiple sclerosis.

  • More Tysabri Doses Mean Higher Brain Infection Risk: FDA

    8 Feb 2010 | 12:50 pm
    The U.S. Food and Drug Administration has placed a new warning label on the multiple sclerosis (MS) drug Tysabri, one that warns doctors and patients that the risk of developing a rare brain infection known as progressive multifocal leukoencephalopathy increases as patients receive more infusions.

  • Mouse Study Finds Clues to Origins of MS

    25 Jan 2010 | 9:50 am
    Scientists working with mice have found that a gene called ZFP191 is needed for the development of the cells that produce myelin, and that a single mutation in this gene causes the animals to suffer from a condition similar to multiple sclerosis.

  • Teen Obesity Boosts Multiple Sclerosis Risk: Study

    25 Jan 2010 | 9:41 am
    Harvard researchers have found that adolescent obesity appears to increase a person's risk of developing multiple sclerosis.

  • Two MS Pills Show Promise in New Studies

    25 Jan 2010 | 9:31 am
    According to new studies, two drugs--fingolimod and cladribine--have shown promise in becoming the first pill-form medications for relapsing remitting multiple sclerosis.
 
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    FierceBiotech: Multiple Sclerosis

  • Acorda MS drug approval sparks buyout buzz

    John Carroll
    25 Jan 2010 | 5:07 am
    Late Friday afternoon regulators at the FDA approved Acorda's multiple sclerosis drug Ampyra based on data demonstrating that patients taking dalfampridine were able to walk faster than a control group. And this is the first time the FDA has approved a therapy for improving walking speeds. "Trouble with walking is one of the most debilitating problems people with MS face," said Russell Katz, director of the Division of Neurology Products in the FDA's Center for Drug Evaluation and Research. Acorda had the solid backing of the FDA's experts for the drug. The advisory committee voted 12 to…

  • FDA approves Acorda's new MS drug

    John Carroll
    22 Jan 2010 | 12:49 pm
    The FDA announced Friday afternoon that it has approved Ampyra (dalfampridine) extended-release tablets to improve walking in patients with multiple sclerosis. In clinical trials, patients treated with Ampyra had faster walking speeds than those treated with a placebo. This is the first drug approved for this use. "Trouble with walking is one of the most debilitating problems people with MS face," says Russell Katz, M.D., director of the Division of Neurology Products in the FDA's Center for Drug Evaluation and Research. Ampyra will be manufactured under licenses from Elan and…

  • Blockbuster data: Studies back efficacy of late-stage MS pills

    John Carroll
    21 Jan 2010 | 6:31 am
    A trio of new studies has underscored both the distinct therapeutic advantages as well as the blockbuster market potential of two new oral drugs for multiple sclerosis. But while the studies demonstrated a reduction in the number of relapses and a slowing of disease progression--while beating an established interferon therapy after 12 months of treatment--the drugs' ability to suppress the human immune system also triggered a higher rate of infections. The news in the NEJM articles was a clear plus for Novartis and Merck KGaA, which have both been advancing oral MS drugs through the pipeline.

  • Avanir stock boosted by promising Zenvia data

    Maureen Martino
    9 Oct 2009 | 8:23 am
    A Phase III trial of Avanir Pharmaceuticals' closely-watched drug Zenvia showed that the drug relieved Pseudobulbar affect (PBA) in a subset of multiple sclerosis patients, sending Avanir's stock up as much as 16 percent. PBA is a neurologic disorder that occurs secondary to neurologic disease or brain injury, causing sudden and uncontrollable bouts of crying, laughing, or other emotional displays. Over the course of the 12-week study, Zenvia met the primary efficacy endpoint by reducing PBA episode rates by an incremental 11.9 percent beyond placebo. A lower dose of the drug…

  • Novartis on track to seek oral MS drug OK

    John Carroll
    30 Sep 2009 | 4:36 am
    Novartis took a big stride toward filing for approval on an oral therapy for multiple sclerosis, revealing that a two-year, Phase III trial for FTY720 produced solid evidence of its superiority to a placebo. Better yet, though, some analysts were quick to conclude that the data lays out a clear case that the drug is better than standard-of-care. And they were heartened to see that the low-dose pill did almost as well as the high-dose version, giving Novartis a shot at filing for an approval on the dose with the best safety profile. FTY720 is a big player in a bold move to introduce a new…
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    About.com: Multiple Sclerosis

  • Could Teeth Brushing Impact MS?

    2 Feb 2010 | 3:21 pm
    It is known that having "bad" bacteria in your body can cause the immune system to act up and (potentially) worsen autoimmune diseases. In multiple sclerosis, this could theoretically mean an increase in the severity of MS symptoms. To test this theory, researchers conducted an experiment with a common bacteria, Porphyromas gingivalis (the cause of "gingivitis"). It is known that these bacteria produce a lipid that can cause the immune system to "act up." The researchers injected the lipid into mice that had a "mouse version" of MS. The MS-like symptoms in the mice worsened after the lipid…

  • MS Doesn't Impact Pregnancy Outcome

    2 Feb 2010 | 3:10 pm
    When I was pregnant with my twins, I honestly felt so physically terrible (with morning sickness and pregnancy aches and pains) and was so emotionally worn out (from worrying about all the potential things that I imagined could go wrong with a multiple pregnancy), that MS was the last thing on my mind. As it turns out, the MS was unlikely to have affected my pregnancy (which resulted in the birth of two healthy girls). A study shows that having MS doesn't impact pregnancy outcome. Researchers looked at 18.8 million total deliveries (10,000 of which had MS) in a national database. They found…

  • Scientists See Immune Cells Invade

    2 Feb 2010 | 6:33 am
    In MS, it is thought that the main problem stems from certain immune cells "crossing over" the blood-brain barrier into the brain and attacking the myelin that protects nerve cells. Exactly how they do this is a bit of a mystery. However, scientists recently have managed to observe this never-before-seen behavior. In the link the below you can see a picture of immune cells attacking nerve cells (and a very technical description of what is happening). Take a close look and read the description of what is happening. To me, it is extra-creepy to see that the picture actually captures the immune…

  • What’s Up With Oral Drugs for Multiple Sclerosis?

    26 Jan 2010 | 1:06 pm
    I feel a little negligent. I heard back in December that Merck KGaA's oral drug, cladribine, had not been approved by the FDA for use in multiple sclerosis. I mentally shrugged and didn't do any further research into the situation (mainly because there was so much excitement about the CCSVI and MS thing). I had wrongly assumed (again, naughty me) that there was a failure to show significant improvement in some MS endpoint and that was the issue with the FDA application. Not so. As it turns out, the application for cladribine tablets for use in multiple sclerosis was incomplete - a clerical…

  • Give Back for MS with “The Circle of Ten”

    25 Jan 2010 | 6:35 am
    I recently met a guy named Adam, whose father had passed away from complications related to primary progressive multiple sclerosis ten years ago. Adam's family wanted to commemorate his father in a special way and decided to raise some money for an MS organization. In these times of heightened economic hardship, epidemics and natural disasters, that might seem a difficult task. Adam's mom came up with an idea that she calls "The Circle of Ten." It is very simple: one person recruits ten people that they know (she wrote a touching letter to do this) to ask ten people from their circle of…
 
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    Down the MS Path

  • Exercise and MS

    6 Feb 2010 | 3:14 am
    Besides improving mobility and strength, exercise therapy improves daily living, quality of life, and even the mood of MSers who participate. What about fatigue? There is a theory that aerobic exercise might fight fatigue even though exercise usually heats up the body, and for MSers heat often results in fatigue. Hmm. Sounds like a vicious circle. Maybe not.The University of Buffalo is researching that very question. Their study will determine "the effects of a 12-week aerobic exercise program on fitness, core and skin temperature, and heat flux in MS patients."And here's something for…

  • Ampyra Approved!

    22 Jan 2010 | 3:10 pm
    Today Ampyra received FDA approval.This therapy by Acorda Therapeutics increases walking speed in the four major MS types - RRMS, SPMS, PPMS, and PRMS.Ampyra is in tablet form, previously known as fampridine. It is being developed in the US by Acorda Therapeutics, the company that works with zanaflex, and outside the US by Biogen Idec.Ampyra is expected to be commercially available by March of this year. Read the press release.

  • Two Ideas

    6 Jan 2010 | 3:39 am
    Michael B. Gerber has some clever ideas and observations that help us think outside the box. Here are two posts that do just that:It can be doneMichael tells us a marching band from a blind school reminded him for something to be done, the idea must come to someone who then shares it. He asks us each to ask ourselves "What can I do?" When you have an answer, share it. It may be the beginning of something important.The Story of an MSer taking a SkydiveI have been thinking about this since I first read it, falling, not soaring. Almost everyone I know really like it whether they can describe it…

  • Oral Medication

    28 Dec 2009 | 2:53 am
    Okay, pills for MS are not yet available, but they are coming soon. Soon is a word we hear about medical trials quite often. We do not know exactly when soon means, but we are closer than ever before.There are five, yes, five different possibilities of oral medications in trials at this time. The first two approved will probably be cladrbrine and fingolimad. Familiar names — coming soon to a pharmacist near you.Many of us with MS have been waiting for these two oral medications to reach the market. When it happens, I hope there are plenty of pills and that they make a difference in our…

  • My Card for You

    24 Dec 2009 | 5:16 pm
    For the Christmas Tree, Garry used IFL Labs software for the fractal and Jasc animation software for the animation.
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    Blindbeard's MS Blog

  • Courage And A Little Hope

    6 Feb 2010 | 4:37 am
    At the MS gym that I am now a proud card carrying member of, which I never saw coming due to my negative preconceived notion about it, they are making a quilt to raffle off as a fund raiser for the gym. They want everyone who is so inclined to to take a square, make a design that represents them and how they feel about MS, how they deal/fight it, and write why they chose that design. I took a big square and a little square, not out of greed but because they want people to make both if that is their wont, and it is my wont. I puzzled over what I would do. I tossed around different ideas, like…

  • In My Defense

    1 Feb 2010 | 4:24 am
    I got this comment the other day in reference to my blog post http://http://blindbeardsmsblog.blogspot.com/2009/03/i-hate-puberty.html.Why do you need to be so critical, how about instead of venting your story off to the rest of the world you remember your own puberty and realize that she just might be embarrassed or scared? How about you try to make her feel better instead of making up a dumb story of how you're going to kill her. Guess what, every other mother has to deal with these issues and you can read that from other parent blogs or watch it on sitcoms. So get over it! Plus, if your…

  • Never Gonna Live That Down

    8 Jan 2010 | 3:40 am
    What an eventful last few days we have had. Being snowed in has brought us so much closer and made us remember just how much we love each other. Well, not so much. It's been more like fighting and seeing who is the Queen of the Wii and that only depends on which game we are playing. I'm so out of practice on a ton of those games that Princess has been handing my ass to me more often than I get to hand hers to her. But today promises to be another snow day so I will get to hone my skills and maybe not be last in all the games. Sigh, dare to dream.The other day Princess wanted to see what her…

  • Who Needs Martha Stewart When You Have MS?

    3 Jan 2010 | 4:38 am
    *Author's Note: I posted this one before, but after my last post I felt this one would be a good follow up. I know most of you -- if not all -- have read it, but it is still too true. The only difference is that I now have EVEN MORE stuff in my house. And some of the references are outdated, ie it has been a few more years since being diagnosed and my husband is now my ex.I didn't go to the MS walk this year. I had several very good reasons why I skipped it: 1. Every time I go I get annoyed and/or frustrated by the people who push past rudely to get to the free stuff or don't move an inch…

  • This Blog Is Brought To You By:

    1 Jan 2010 | 4:49 am
    Copaxone, "Leave no area uncovered!"Do you find yourself missing those maddeningly itchy mosquito bites in winter? Do you want to have so many lumps on your body that people think you sprouted more boobs? Are there still some areas on your refrigerator where you can see the fridge? Do you have some space left on your bookshelves? Are you not getting as much mail as you would like? Would you like more people to call you? Then you need Copaxone!Copaxone can give you all the itchy injection sites you can scratch in a day, and even more for the next day! Why settle for 2 boobs when you can have…
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    Trevis's MS Blog

  • New Information from the FDA on Tysabri

    admin
    8 Feb 2010 | 1:42 pm
    As if progressive multifocal leukoencephalopathy (PML) wasn’t a big enough word to get out of our mouths and a big enough concept around which to get our brains…now there’s immune reconstitution inflammatory syndrome (IRIS)! This morning, the US Food and Drug Administration (FDA) has posted notice to the neurologic community (and thus they believe to patients) that the risk of developing PML increases with the number of doses one receives.  In the same MedWatch bulletin the FDA mentions another adverse event which is, “characterized by a severe inflammatory response” and can create…

  • How’s Your MS Today? Where Did January Go Edition

    admin
    3 Feb 2010 | 3:11 pm
    It’s one thing for February to fly by at the speed of a cartoon character, but January is a full on all-the-days month; where did it go?!?! Every month we take time out in one of our postings to open the cyber floor 100 percent to your issues.  We begin by asking the title question, “How’s Your MS Today?” and it goes from there. Multiple sclerosis changes seasonally, new treatments come and go from the press, symptoms arise, disease progresses, and every month, we (try to) stay a constant in this post. It gives you a chance to check-in with others in our community and with…

  • Weighing In on CCSVI and the Liberation Treatment

    admin
    1 Feb 2010 | 2:59 pm
    Before I launch into this topic for a second (and more informed) time, let me remind us all that just because I write this blog, it does not mean I have all the answers…not even a plurality of them, really. Earlier in the month we posted my preliminary thoughts on the subject of Dr. Paulo Zamboni’s research into chronic cerebrospinal venous insufficiency (CCSVI) and what he calls the Liberation Treatment.  At that time, I stated a skepticism which I felt healthy but others equated to some form of conspiracy, in which I was a player. I am not. After reading the published papers of Dr.

  • FDA Approves the Walking Pill for Multiple Sclerosis

    admin
    27 Jan 2010 | 3:01 pm
    As of Friday afternoon, a long awaited addition to our arsenal of MS symptomatic drugs has been approved. We had a conversation about Ampyra which is a timed-release version of the drug 4-Aminopyridine (and formerly known as Fampridine SR), last May.  At that time the drug was being resubmitted to the FDA for approval (rejected, originally, due to “formatting issues” during the application process). This drug is thought to increase signal conduction by blocking tiny pore-like potassium channels on nerves of the central nervous system (CNS). The time-released part of the drug is what is…

  • How Do We Know if our MS Drugs Are Working?

    admin
    25 Jan 2010 | 11:59 am
    It’s a question that most all of us have asked ourselves and/or our doctors.  It’s a question based on our understanding or perhaps misunderstanding of research data.  It’s a question of faith in “modern medicine.”  It’s a question of hope for the future but still, it’s a question worth asking! The original numbers from those first (now nearly two-decades old) drug studies told us that our MS attacks could be reduced by some 30 percent.  Did that mean that we would have 30 percent fewer exacerbations? Would they be 30 percent less severe? Or would the drugs only work for 30…
 
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    The MS Recovery Diet

  • Zoran’s Bosnian Cake + Valentine’s Variations

    Judi B
    29 Jan 2010 | 8:28 am
    Zoran is a new family friend who gave me this recipe for Christmas. His cake is made with sugar, egg whites, white flour and milk. I confess to having 1 small piece of his cake at Thanksgiving and 1 the day after. Although I did not appear to suffer any immediate ill effects, it was so delicious I decided to try my hand at making a reasonable facsimile that I could eat with more confidence on special occasions. If you cannot tolerate extra saturated fats, glucose or carob/cocoa- SKIP IT. Please. Have rosy baked apples instead. Oil a 7x10” pan or use an 8x8” pan. Preheat oven to 350…

  • Forum Bloggers Unite!

    Judi B
    15 Jan 2010 | 9:56 am
    It is so heartening to read the exchanges between participants on this website. The kind of advice and support you offer one another is invaluable. Please know that even if your entry does not receive a comment in return it does not mean that your questions and concerns were not important or relevant. Somebody has read it and had the same question even though they may not feel able to respond. Many people read the website offerings but have not felt ready to acquire a password and to participate in writing. We have formed a community nonetheless and it works. It is so rare to find a website…

  • Happy and Healthy New Year!

    Judi B
    4 Jan 2010 | 6:56 pm
    I welcome all newcomers to our site and remind those of you who have often checked in over the last few years that your comments, personal stories, suggestions and recipes are always welcome and useful for all of us no matter where in the world that we live. Please feel free to ask questions and voice your opinions. Ann and I are always learning from you, our readers, and it is to our mutual benefit that we offer this website. This year opens up a whole new avenue of exploration for my own health issues. I have known for some time that some of my symptoms were not due to MS. According to my…

  • Holiday Hopes

    Judi B
    17 Dec 2009 | 7:30 am
    Ok, the holidays can be happy events and a heartful gathering time for families and friends. They can also be quite stressful. Too many engagements to show up for, too much food that is not on the diet, and the desire to either show a happy face or the need to repeatedly explain the unexplainable in answer to, “How are you feeling?” Our best intentions to be calm, eat well, and rest can be overridden by the demands of the weeks ahead. You are your own best advocate. You are the only one who can really know what it is like if you veer off the diet and summon old symptoms to return. Only…

  • Creamy Fish and Vegie Pasta

    Judi B
    10 Dec 2009 | 6:01 pm
    Serves 2-3 people I have been buying mostly wild caught cod that is locally available and is not a Deep Sea fish that I also avoid because of mercury. But any fish that is a little thick and will flake apart in biggish chunks will do for this recipe. The first step can be all assembled whenever you have the time and energy to prepare it. It can be reheated ½ hour before eating. Served with a salad this makes a complete meal. As always, if onions or carrots are not good for your body, substitute another vegetable on the sweet side- like beets, parsnips, sweet potato, or some winter squash…
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    My Journey: Living well with MS

  • Whooping Cough .... Anything is possible with me ....

    4 Feb 2010 | 12:48 pm
    I have been fighting what I thought was bronchitis since before the New Year and was just diagnosed with whooping cough. How strange is that!I saw my fantastic asthma doctor today (he was the one who diagnosed it) and his name is Dr. Jocelyn Celestin. I have been seeing him since the mid to late 1990's and he's followed me through thick and thin. I have seen him outside and inside the VA hospital. he diagnosed me with whooping cough by the sound of the cough, the symptoms and the fact that my lungs and sinuses are clear. The cough threw me across the room once and I thought I busted a rib or…

  • Still chasing the Sarcoid train ...

    2 Feb 2010 | 2:18 pm
    My neurologist is still believing I should continue down the Sarcoidosis path given the recent lung lesion, bronchial infections, eye stuff (is it uveitis or optic neuritis) and joint pain and neuro symptoms which can totally go along with sarcoid.My next step is a pulmonologist and a GAD-enhanced PET scan to look for granulomas and or a biopsy. It's the next step to look at and potentially rule-in or rule-out Sarcoidosis. If that all comes back negative, I am being sent to a rheumatologist (it's been since 1990 since I saw one). SI joint is really bothering me and my eye is busted .... but…

  • Traveling with a walker - my new companion

    16 Jan 2010 | 8:34 pm
    This is the first trip ever that I have traveled as a disabled person. I have usually been able to keep things under wraps and mobility has been manageable with rest and pain medication. I am reaching the point where my mobility is really being affected because of pain, clicking and stiffness in my sacroiliac joint. It has been affecting both sides lately but is more prominent on my right with my reconstructed knee. Also, I am having constant muscle twitching in my legs (various muscles on both legs) that is quite bothersome and actually keeps me awake. I am dealing with very specific pain in…

  • Time for some R & R

    10 Jan 2010 | 9:55 pm
    One would believe that being "retired" means every day is filled with "R & R". Believe it or not though it's easy to get stuck in your head and entrenched in chronic pain and chronic illnesses--this is anything but relaxing! I am taking a vacation from all of that and headed to Las Vegas for a short respite to forget about the world around me for a little bit. I am going to forget about doctor's appointments, CT scans, MRI scans, MS, surgeries, and hopefully control the amount of chronic pain that I am dealing with. This is the first trip that I have ever traveled with "Jimmy" -- "Jimmy"…

  • Watchful waiting ...

    30 Dec 2009 | 5:57 pm
    I spoke with my primary care doctor who is sending my CT scan results to my neurologist Dr. Krupa Pandey to evaluate. I need to get the actual images from the Albany VA if I want to carry them.Right now, the plan is to re-scan the lungs in 4 months and "follow the nodule". If it does not change, we will be in good shape. If it does, then next steps will follow.I feel good about all this. In the meantime, I am going to the doc tomorrow to see if there is something that can be done about my chest cold situation. I want to be in good shape for Las Vegas.So, in April another scan. Until then, I…
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    My Journey with MS

  • Too short for a title.

    Kimberly
    29 Jan 2010 | 2:36 pm
    Received negative news yesterday, but like my MS, I refuse to allow it to ruin today or the weekend. I have faith that everything will work out. Whether it be the way I want or not. I try to focus on the fact that there are so many people who have a tougher road to walk than I do. MS sucks, but it could always be worse. Although right now it's hard to focus on the positive when you cant find it. I'm sure I'll trip over it soon, but right now things seem a bit glum. So, focus on my blessings, focus on my blessings is my mantra for today. Husband, Family and friends. Oh, and my furry critters…

  • OK now I'm

    Kimberly
    28 Jan 2010 | 12:44 pm
    pissed. We're talking big time, full blown even angry at God PISSED. I just received word that the State of California in their infinite wisdom decided to deny my industrial retirement. Even though their own MD said I couldn't return to work due to the injuries. (This is on top of the MS). I have just had it. When am I going to get a freaking break? Sure, I can appeal. But I have to hire an attorney to do that. I don't happen to have that kind of money lying around. Work says I can't do the "essential duties" in a wheelchair so I can't come back to the same job. However, I CAN come back to a…

  • Another day in paradise.....

    Kimberly
    28 Jan 2010 | 11:57 am
    Woke today to a beautiful day in the SFV. Clear blue skies with a crispness in the are that reminds us that winter is still here. Today we head back up to the mountain. No snow up there, but the high is in the 30's. I've enjoyed the few days here. Did too much and pushed to hard as usual, so I'm tired. However, I think it's a good tired. My left leg is bothering me a bit, but nothing worth complaining about. I can't believe we are almost at the end of January already. I think time goes fast for me because it's based on Doctors appointments. One right after the other. I'm a bit peeved at my…

  • Who am I?

    Kimberly
    25 Jan 2010 | 6:59 pm
    Sometimes I feel as if I no longer know who I am. MS has changed me so much over the past 3 years. I used to identify myself by my profession, my family, my children. Well, now the children are grown and living thousands of miles away as do my parents and sister. I can no longer perform the "essential" duties of my job as I was recently told. So, who am I? I know I am a person of worth, but I feel as if I am lost. Not knowing which direction to turn. As if I am in a carnival house with smoke and mirrors and every direction I take leads me to a more distorted view of myself. Thankfully, I have…

  • Rantings of a madwomen

    Kimberly
    23 Jan 2010 | 12:59 pm
    WHY, WHY, WHY is the statment that has been running through my head for the last week. I'm frustrated with my Neurologist who now wants to consult with UCLA before he decides what the hell he's going to do with.me. I wish he'd just make a freaking decision. This is the third office visit in a row where he's been indecisive. Meanwhile our insurance copayments for our drugs doubled. When your on 7 different pills each day PLUS your injection it's expensive. I've tried to wean myself off some of the drugs, but I can't handle the symptoms they help mask. So now my co-pays are almost 250 a month…
 
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    My MS Journal

  • First Infection....

    25 Jan 2010 | 9:52 pm
    Hi everyone! I'm writing to you from my blackberry at Kadlec Medical Center ICU. So I'm not really an ICU patient, they classify me as Intermediate Care but there were no beds available there so this is where I was placed. Anyway, I was admitted yesterday and really hope to go home tomorrow. Basically I have come down with a cold but since I don't have much of an immune system it didn't take much to get really bad....only about a day. My heart rate went up, oxygen went low and now I'm back on steroids....which SUCKS!!!! But, I am much better today and as much as I hate steroids they are a…

  • 2010! Looking forward to a New Year!!!!

    13 Jan 2010 | 11:32 pm
    Hi everyone! I can't believe it is already the 13th of January. It has been almost a month since I last posted (as my father pointed out this evening). I hope you all had a wonderful Christmas and New Year's filled with lots of love and happiness. My holidays were great. Christmas was spent with my family. It was quiet, relaxing and more than anything just great to have us all together. My New Years was pretty much the same way, minus all the family. It was horrible weather that night (super icy) and Justin had to work, so it was just me and my son. We watched movies, hung out and then…

  • Day 90 - 3 Months Post-Transplant!

    20 Dec 2009 | 10:33 am
    Day 90! WHOO HOO! I almost can't believe my 3 month mark is already here. What a crazy 3 months it has been too. So many changes.....some good, some bad, most difficult. Today is the milestone where they say I can now eat some of the yummy things I have had to avoid, I'm able to eat out if I want (although I have to admit over the last week I have already eaten out....however I have been VERY careful about what I have had). Had I not had a positive CMV result this would also be the point where they would quit checking me for CMV. So let's take a look back.....Day 1 was on September 21st. I…

  • Probably Not MS! :)

    15 Dec 2009 | 11:39 pm
    So my symptoms are probably not actually MS. It turned out my legs were quite swollen and that was actually related to the lovely blood clot I have currently. Did I mention my blood clot before? I'm pretty sure I mentioned it in an earlier post. Anyway, I had two blood clots but after 5 days of Lovenox (an anti-coagulant) the clot in my jugular dissolved. The clot in my arm however got worse. My Oncologist wanted me to continue on the Lovenox however my insurance didn't want to pay for it (It's about $7000 a month). After almost 10 days of my pharmacy and doctor's office fighting with the…

  • MS Symptoms....Urg

    12 Dec 2009 | 10:55 pm
    It was bound to happen....some of my MS symptoms have returned. They are not as bad as before but still they are here. Basically tonight I have had some numbness in my lower legs and feet. Of course I was hoping this would not happen but the reality and from what we know about the transplant is that it is not a cure (even though it is probably the closest thing we have right now to a cure) what it does is slow down the progression, hopefully putting us into remission. The damage that was done before the transplant is most likely permanent damage and likely to still be a part of us. For the…
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    The Symptoms Of Multiple Sclerosis Blog

  • Pearl Designed Bridal Jewellery

    The Symptoms Of Multiple Sclerosis Blog
    9 Feb 2010 | 2:05 am
    Pearls are a popular favourite of many brides due to their elegance and simplicity. If you are searching for the perfect bridal jewellery, you can choose to look into the design of your gown first. Those who want options other than plain white pearls can have a few options in different shades and sizes. From peach and pink pearls to gray coloured ones, you will surely find the pearl jewellery that goes best with the colour motif of the wedding. Pearls are enhanced when paired with gold or silver and even more stunning with diamonds.

  • Wearing a Sparkling Bridal Tiara on Your Wedding

    The Symptoms Of Multiple Sclerosis Blog
    8 Feb 2010 | 7:21 am
    As the bride, your guests will surely want you to look striking during the wedding. The bride’s gown, along with the hair and face will definitely be gaining most of the interest. It is essential therefore, to find the best bridal tiaras. There are many designs for bridal tiaras, so you need to single out the one that represents your style. A big tiara that looks like a crown is ideal for a princess themed wedding. If you want to look more classic and simple, one alternative is to put on a single band tiara dotted with dainty cuts of crystals and pearls.

  • Gifts for Women – How to Choose the Ones They’d Love

    The Symptoms Of Multiple Sclerosis Blog
    5 Feb 2010 | 9:16 pm
    Although most people say that finding gifts for women is hard, the secret is simple. You either have to know her well, or you just find out what she likes. A timeless gift women love is jewellery. But you have three things to keep in mind when buying one. First, consider the thought behind the gift. It doesn’t have to be expensive, what matters is the care and effort that went along in choosing the gift. Second, don’t buy on a whim and guess as to what she likes. It’s better if you ask her friends or family what she likes. Third, if you’re giving your wife a present,…

  • Buy GenF20 If You Want To Be Young Again

    The Symptoms Of Multiple Sclerosis Blog
    4 Feb 2010 | 10:04 pm
    A lot of cosmetic products especially those that belong to the anti aging products shelf are claiming that they can actually provide the skin with two of the most important substances called elastin & collagen which is needed for your skin to stay young & healthy but do you know that this might not be good for your skin’s health in the long run? You can ever be sure about products like these, that’s why, personally, I would go for something that can make me feel and look younger from the inside and thank goodness I have found GenF20. Today, my friends say that I look like a…

  • The Only Melatrol Side Effects You Feel Are Good & Quiet Sleep

    The Symptoms Of Multiple Sclerosis Blog
    4 Feb 2010 | 12:55 am
    Insomnia is one of the most common and dreaded irregularity that a man can experience today and why not? When a person lacks sleep, he will be inefficient in his job and he will always be behind deadlines and schedules. A student can lose focus in his studies which will cost him a scholarship or will lose a car for a gift on his graduation day. Lack of sleep can also make one person’s blood pressure rise which might end up in other worse situations. But do you know what makes you not to fall asleep soundly? It’s stress and things can get really worse if you go for over-the-counter…
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    activisMS

  • Raleigh Transit Authority Public Hearing Notice:

    5 Feb 2010 | 5:46 pm
    WHEN: 4:00 PM, Thursday February 11, 2010WHERE: 2nd Floor, Municipal Building, Raleigh City Council ChambersThe Raleigh Transit Authority, RTA, is holding a public hearing on Thursday, February 11 to discuss the proposed Implementation Plan for the Accessible Raleigh Transportation System -Alternatives Analysis. Following a presentation and discussion regarding future route changes, staff will present the five proposed implementation objectives derived from the Accessible Raleigh Transportation System - Alternatives Analysis. A Public Comment Period will immediately follow the…

  • How My Health Care Costs Affect Others *by Alex O'Connor

    5 Feb 2010 | 4:49 pm
    February 3, 2010 How My Health Care Costs Affect Othersby Alex O'Connor Posted to activisMS on Friday, February 5, 2010My health care costs take up a large portion of our income. You may say “So that is your problem”. Actually it becomes a lot of peoples problems. I have five animals who do not get yearly exams and dental cleanings like they used to. The veterinarian is losing hundreds of dollars. Multiply that by other clients who are cutting back and he may have to cut back and lose an employee. Then that employee suffers. I canceled all service contracts with plumbing, hvac, and pest…

  • What can we do for you?

    5 Feb 2010 | 6:05 am
    One of our goals here at the Eastern North Carolina Chapter of the National Multiple Sclerosis Society is to provide our members and readers with access to helpful and important information. Please leave a comment if you personally have followed any of the posted links, plan to in the near future, or have any follow up questions. We will continue to work hard at meeting your needs. Also, be on the look out for our advocacy and interest survey coming out soon! This will be a great opportunity to voice your personal concerns and direct our policy efforts over the next two years.

  • Accessibility at DOT facilities

    4 Feb 2010 | 9:35 pm
    In 2009, the North Carolina Department of Transportation(DOT) conducted a statewide survey on the accessibility of its buildings. They found problems with 60 driver’s license offices and 39 license tag agencies. The type and severity of problems range. Some buildings have no accessible parking, while other facilities do not have accessible bathrooms, water fountains or counter tops.The NC DOT will be working with advocacy groups to resolve these critical issues. Recently, a NC DOT representative spoke with the Raleigh Mayors Committee for People With Disabilities as part of the outreach…

  • Long-Term Care Services & Supports You Should Know About !

    4 Feb 2010 | 11:22 am
    Nearly a quarter of individuals living with MS will require long-term care support and services at some point during the course of their disease. In the past decade, North Carolina's long-term services have suffered due to increased service costs and a rising demand for assistance. Luckily, North Carolina received a new line of funding and the Office of Long-Term Services and Supports, a division of the NC Department of Health and Human Services, has a plan to revamp the processes of applying for as well as issuing aid. New procedures encourage integration both in the delivery of care as well…
 
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    Carole's MS Blog

  • Doctors Should be More Like Dentists

    9 Feb 2010 | 6:31 am
    Let's start with a bit of dental trivia or rather, something I didn't know. Be careful going out in the cold after having a local anesthetic. You can easily get frostbite. First my dental update and then I move on to my doctor diatribe. I have two teeth back in service, one that is on a death watch, and two that have to come out. I'm planning to get implants for those. The process to have implants done is very long and expensive. The benefit is that once they are in, they are good for at least twenty years. I'm glad my dentist, likes being a dentist. It makes a big difference in how you are…

  • Got Milk?

    4 Feb 2010 | 7:17 pm
    So do you think it's weird we drink milk from plastic bags?I like bag milk because I can freeze it and I always keep a couple of extras in the freezer. Saves trips to the store. Nothing more annoying than running out of milk during a snow storm. Unlike Sheryl, I don't jiggle the bag to get it in the jug. I give it a good whack on the kitchen counter to make sure it's in there solid. I also don't cut the end with scissors. I slice it with a steak knife. Much more sanitary. Yeah I'm weird. AND you should try ketchup and dill pickle chips!

  • Ground Hog Day

    2 Feb 2010 | 6:10 am
    Looks like all the hogs are predicting six more weeks of winter!

  • A Plug

    1 Feb 2010 | 5:18 pm
    Today I received a very nice email from Daily Writing Tips, asking if I would give them a plug and possibly post a link to their site. Well I did do that awhile ago but it can't hurt to do it again, especially since they are celebrating 1000 posts!If you like to write, feel the need to brush up on your grammar, or if you just find the English language fascinating, you will enjoy this site. Subscribe to the daily writing tip. I admit I have learned a few things. Amazing how the language evolves with new words and expressions emerging all the time. Just think; twenty years ago nobody had a…

  • Skin Cell Research

    29 Jan 2010 | 7:59 am
    Read here about scientists who have been able to turn mouse skin cells into neurons. Lets hope the same procedure works using human cells.And here's a rational article discussing the pro and cons of mammography. Myself I don't go for a mammogram every year and to be honest I only go to stop people from nagging me. That doesn't mean you shouldn't. I just am not convinced that they do much. That is my opinion. I'm not saying I'm right. I wanted to write an entire post about medical research but truthfully I am way too tired after a week of dental and office woes. I'm grateful that I had a good…
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    Carnival of MS Bloggers

  • Carnival of MS Bloggers #54

    28 Jan 2010 | 8:41 am
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Living a Normal MS Life and Cognitive ReservePE Class, Wildwood Flower, and Buttonsby Kmilyun at Bifurcate in the RoadAugh you might be asking what in the world do adaptive PE, flowers, and buttons have in common. The short answer is me LOL.Hang on to the edge of your chairs now because this is going to be one of those real exciting blog posts that you surly spent hours awaiting!First off I could take paragraphs to go into all the things I can no longer do.

  • Carnival of MS Bloggers #53

    15 Jan 2010 | 7:39 am
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Happy New Year!!Here we are in 2010. Wow. This will be the 3rd year in the Carnival of MS Bloggers' existence. Can you believe it?! We've had two years of brilliant writing and sharing by MSers of the blogosphere. Thank you so much for reading and for supporting each other with such open arms and hearts. MSers truly rock!What The H***? by Judy at Peace Be With YouWhat the H*** happenedto my life, the one I planned?It’s sure not this one.I’m used to…

  • Carnival of MS Bloggers #52

    21 Dec 2009 | 12:22 pm
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Family, Friends, Love and Support - both Near and FarHanging on by My Fingernails by MaryanneThat's what I'm beginning to feel like. Since this is an MS blog I will tell you about my MS first, then I will move on to other things. My next Tysabri infusion is scheduled for Wednesday, December 30. During the past week and a half, most of my symptoms have come back. My tremors were down to just a slight shaking of my head, and now they are full-body tremors…

  • Carnival of MS Bloggers #51

    17 Dec 2009 | 9:41 am
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.The Elusive DiagnosisMy head spins. So many differing opinions, so many docs, so many shifting symptoms, so many labels, so many possible overlapping reasons, so many experimental protocols, just one me. Always just a smidge outside the box. I'm envious of those with neat tidy labels. Yet realize the label doesn't always come with a solution. My head spins.My desk is full of journal articles and website print-outs. Some carefully read, highlighted, and…

  • Carnival of MS Bloggers #50

    3 Dec 2009 | 7:00 am
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Newly-diagnosed Copaxone user Sarah says I Hit a Vein Today and....It HURT!!!Really bad.It was in my left thigh, I fired and everything was fine. I waited my 10 seconds as the Copaxone slowly transfered from the syringe into my body and when I pulled the Autoject away, I almost passsed out.BLOOD!LOTS OF IT! At the very moment I saw it I thought, "Ugh, that's not good". I cleaned it up and luckily it stopped bleeding pretty quickly. I sat on the side of the…
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    Living! with MS

  • Color me a different shade

    2 Feb 2010 | 6:20 pm
    Sadly, I'm not even interesting to me anymore. I'm sick of sameness, sick of listening to myself mull over the same crap, sick of the job, sick of the routine and I'm still seeing little change on the horizon. I want to do something different, create something beautiful, but I seem stuck in blah. When I get a break from working, I feel either too physically, or too mentally drained, to do anything remotely exciting. I'm trying to accept that-- for now. I'm completely discontent thinking that this stagnation will last for long. I'm determined to claw my way out, do something that isn't work,…

  • Work, Sleep, Repeat again

    26 Jan 2010 | 5:39 pm
    Lately this is just about it... Work, sleep, repeat-- it does not leave much time for blogging either. Right now,I'm actually still working but I'm just watching the desk at the yoga studio, so it's pretty mellow. The last two days, I stayed at school late. Yesterday, I made parent calls for conferences this week until 5:00, then I drove home, ate and slept. Today I worked, went to a union meeting, worked some more and then came to the studio to work some more. Tomorrow I plan to go in early to meet with a student and then to work a bit more before the day officially starts. The hardest part,…

  • Epiphany

    20 Jan 2010 | 5:42 pm
    I thought I better write this down before I forget it (LOL). All my introspection seems to have paid off.A few months ago, my mother repeated a question to me posed by her meditation teacher. The question was, "What is your true heart's desire?" I realized that the answer to this question is much more important than having a tangible dream. It gets at the essence of what we really want without all the problems caused by expectations (our own and those of others).I know what my heart truly desires. Above all things I desire freedom.I want the freedom to do whatever I might dream of doing. I…

  • Teenager without the pimples

    19 Jan 2010 | 4:45 pm
    I like the blog because it helps me travel light. I like the way it keeps me writing on a regular basis but at times I am unsure about it too. There are still the questions: what belongs on what blog? How much should I really say on this blog? Should I stick to the topic of MS? Does the "Living!" part in the title of the blog give me license to expand the topic? The truth is since it's my blog, I guess it can be anything I want... Hello obsessive stranger.I'm in the midst of a round of angst. Do you ever really get over it? I suspect it's not just a teenager thing, but maybe I just spend too…

  • Julie, Julia and Me

    17 Jan 2010 | 1:13 pm
    I just finished watching the movie "Julie and Julia." It's not the kind of movie I would usually be compelled to rent, but one of my yoga students said to me, "You should really see this movie, it reminds me of you."I was somewhat intrigued, so I finally sat down to watch the film. I think I understand now why the film was recommended to me. One, Julie (the main character) dreams of being a writer. Two, she gets her start as a blogger and three, she follows her passion as a guide to her art.I find that I am by no means either Julie or Julia, but they did remind me of a few important things.
 
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    Brass and Ivory

  • Guide to Medical Services for Uninsured Patients

    9 Feb 2010 | 9:30 am
    When you have any sort of health issue and are uninsured or underinsured, it can be challenging to know where to go for affordable health care. In this post, I hope to present a variety of resources which may be useful in obtaining necessary medical care.Included are community health clinics and hospitals, public hospitals and academic institutions, Hill-Burton facilities, government programs, prescription assistance programs and the Patient Advocate Foundation.Read this post in its entirety:A Guide to Medical Services for the Uninsured

  • Will Rogers, MS Diagnosis, Progression, and Disability

    8 Feb 2010 | 11:56 am
    Recently I came across an interesting article (at $31.50 was a bit pricey to access, so I didn't) which discusses whether the criteria by which patients are diagnosed or categorized affects outcomes in clinical trial data. The subject seemed interesting enough that I looked for more information regarding the theory and found that the background research was completed years ago and presented at an ECTRIMS meeting in 2007.First, the article abstract:The Will Rogers phenomenon: the effect of different diagnostic criteriaby Maria Pia Sormani in the Journal of the Neurological Sciences, Volume…

  • Illness in One Word: WORK

    7 Feb 2010 | 9:50 am
    Prompted to think of a four letter word which I might use to describe life with chronic illness, my mind kept returning to the word WORK.Busy with work:While blinded with optic neuritis 10 years ago, I managed to make every rehearsal and scheduled performance without missing a step. All except the one 'kiddie concert' I missed the Tuesday I visited three eye doctors (including my own optometrist, a retina specialist, and a neuro-opthalmologist). Although the high-dose oral prednisone caused my hands to swell up to twice their size, I don't recall cancelling any piano lessons. The MRI showed…

  • Crazy Snow!! 2010

    6 Feb 2010 | 12:12 pm
    There used to be a bench over there. Where'd it go?Hard to tell, but the heavy snow has made this WIDE tree look kinda skinny.The picnic table on the deck (4 ft off the ground) is hidden under snow. Let's go see just how much snow is really on the deck and which didn't blow away.

  • Snow, Ampyra, Ouchies

    4 Feb 2010 | 2:53 pm
    Hi folks,I've been busy around the blogworld lately with the extra research which went into my AMPYRA post over at HealthCentral and other posts yet to be published. If you haven't read it and commented, it would be great if you did. (Some of the folks over there seem to be more highly impressed as the number of comments and page views increase on a post. Personally, I become more impressed by other, non-measurable aspects of our wider community online.)If you didn't see the news, Acorda announced that AMPYRA will carry a wholesale pricetag of $12,850 for a 1-year supply. I called the 1-888…
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    A Short in the Cord

  • Calling All Birdwatchers: Great Backyard Bird Count

    8 Feb 2010 | 7:46 am
    Get ready to count!Here's a description of this event from the Audobon Society's website at http://www.audubon.org/gbbc/"The 13th annual Great Backyard Bird Count (GBBC) will be held from February 12 – 15th, 2010. The GBBC is an annual four-day event that engages bird watchers of all ages in counting birds to create a real-time snapshot of where the birds are across the continent and in Hawaii.Each checklist submitted by these "citizen scientists" helps researchers at the Cornell Lab of Ornithology and the National Audubon Society learn more about how the birds are doing—and how to…

  • Delaware DART Proposed Changes

    2 Feb 2010 | 7:08 am
    I plan to attend this information session and can provide highlights during the DE area MS chat on Friday, Feb 12. If you can't attend this DART session, be sure to pop into the chat -JoanDART Information Session Focuses on Proposed ChangesThursday, February 11, 2010 from 1:00 to 3:00University of Delaware Center for Disabilities Studies461 Wyoming Road, Newark, DE 19716 - Room 132 AThe Administration of Dart First State is proposing new regulations for their Para Transit Service. Representatives from Dart First State will be at the center to present the proposed changes and answer…

  • Results of Latest MS Chat

    22 Jan 2010 | 1:22 pm
    My thanks to the seven people who visited the Multiple Sclerosis Chat room last Friday to discuss self-advocacy, or being the "squeaky wheel." We reviewed notes from the NMSS page that gives tips for standing up for yourself. As always, we discussed a variety of other topics and had more than a few laughs. We had tasty "virtual" treats courtesy of Nancy D, who always brings the best imaginary food. Kathy (the 'rebif' Kathy) visited after a long respite, and it was good to reconnect with her. Welcome back, Kathy!Lisa stopped by to tell us about the newly-FDA-approved oral medication by Acorda…

  • Delaware Area MS Chat Friday: Be the Squeaky Wheel

    20 Jan 2010 | 2:54 pm
    Delaware Area MS ChatFriday 22 January, 7:00 - 9:00 pmSelf-Advocacy: Being the Squeaky WheelWe'll chat about this and anything else that comes up.To attend, just click HERE or click on the coffee cup in the right margin, then follow the directions.Self-advocacy refers to being pro-active and speaking up for your interests. For the MS patient, this means being knowledgeable of your conditions, actively participating in your medical treatments, speaking up for accessibility, and communicating your needs. In other words, instead of being a limp rag, be the squeaky wheel.The National MS Society…

  • I Think It's Circular Thinking I'm Thinking, I Think

    11 Jan 2010 | 5:32 pm
    Okay, so follow this - IF YOU DARE.I have disabling fatigue. I can't tolerate the fatigue drugs so I drink caffeine (lots of coffee) to combat the fatigue. Caffeine inhibits the body's ability to absorb iron from food.I have low levels of iron and have been unable to increase levels through food, so take iron supplements.Iron supplements cause constipation so I have increased my intake of fiber.Increased fiber reduces the effectiveness of my thyroid medication which is needed to regulate my body's ability to do everything.So if I take thyroid meds, I can't increase fiber which means I can't…
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    Navigating the Journey of MS

  • where's the snow plow?

    9 Feb 2010 | 7:29 am
    It is snowing today. Actually it snowed all day yesterday and they expect it will snow all day today. We don't have tons of snow but I ask " where is the snow plow?"Our road is a disaster. It's not like its the "emergency route" for the hospital or something. Oh wait, I believe it is or at least thats what thesigns say that line the street.I would hate to be that pregant woman being driven to the hospital by my husband with roads that look like these. She might just have that baby on my front porch. LOLHopefully the city will do something shortly.Yesterday I had a crazy problem with Paypal.

  • good morning everybody

    5 Feb 2010 | 7:49 am
    It's snowing lightly again today. It is the finest snow I have ever seen. A beautiful snow except I haveto venture out today in it so I am not 100 % loving the snow today.Yesterday I had a bad fall. Just finished taking the dogs out. While closing the outside door I lost my balance ( in the mud room) and flew across the very tiny room. The snowshovels went flying. The broom fell off its hook. The room is small ( as most of older homes mud rooms are) and I touched all four walls at once. Ouch ! Needless to say I have bruises allllllll over.Nothing broke. The dogs ran when they heard the…

  • I'm baaaack

    2 Feb 2010 | 11:21 am
    I feel like I have fallen off the face of the earth lately. Sooooo busy. So much to do.I think I am finally caught up. Only a few things left on my urgent to do list and then I'll put together a new list. hehe !Had a big sale going on and everybody was so supportive. We really appreciate your support and business. I can only donate to MSF and NMSS if people order.We also had a contest for a tshirt of your choice. I emailed the winner of the shirt and then decided I would also give away a MS bear so I emailed her also.Coming up shortly I will be looking for a few good ideas for a new shirt…

  • post birthday

    18 Jan 2010 | 11:58 am
    My birthday was nice. Thanks everybody for the emails and posts.Friday we went out to dinner. A real casual mexican place that reminds me of California. The food is sooo good.Chile Relleno's and margarita's. Ole !Saturday night I get a phone call during dinner so we let it go to the voice mail. It was my "mother".Wow so it's been a year since she has called me. I saw the number on caller ID and needless to say I didn't even want to hear her voice to retireve the message.It seems my dad got sick on Monday and she is just getting around to letting me know. WTF?She never asked how I was doing.

  • yesterday

    15 Jan 2010 | 11:07 am
    Yesterday was my birthday. Always a difficult day in my life.From the time I was a little kid birthdays were always hard for me thanks to my "family".I only remember having a cake once in my life. My sister threw me a surprise party when I was in high school.When Mark and I were first married we had a cake for me at his familys house. I think it was around Christmas but they wanted to celebrate my birthday. I was so overwhelmed I burst into tears.Since that time people know I don't handle the cake thing very well. Give me cheesecake, an ice cream, cupcake and I am okay but a cake I go teary.
 
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    Word Salads,the Demyelination of Me and the Breakdown of a Marriage

  • Tick Tock

    Have Myelin?
    9 Feb 2010 | 9:54 am
    When my father died he left me his grandfather clock but I have not been able to pick it up. When Nicole suddenly died I had to deal with her estate. Estate. I still have to do her income taxes. I have always done them. Always. Now I have to check the deceased box and I am her mother. I will never get to do her taxes again after this year. Never. How sad is that?  I have always done both of my kids taxes. I don't know why. Just have. LOL.  Today the moving van is arriving with my father's clock and my daughter's couch. They were very close but I did not expect them to…

  • Baby steps sometimes mean progress

    Have Myelin?
    5 Feb 2010 | 12:26 pm
    Yesterday I had my first eye exam since the split from whats his name.  The doctor asked me "how many children do you have" and I was NOT prepared for it. It had been awhile since I had been asked that question and immediately I burst into tears. Oops. It had snowed so it was a very slow day at Wal-Mart. I don't remember how he handled the rest of conversation but he kept asking about my children. He asked me about my son and then he went back to my daughter. He was not uncomfortable asking me more questions about Nicole I saw... how odd. I guess it made me feel more…

  • Social Security and Medicaid AGAIN

    Have Myelin?
    4 Feb 2010 | 2:42 pm
    Social Security might need a bailout?  Is anyone surprised?  BailoutContacted Medicaid again. If I put the "Maid" on hold for more than 30 days I will lose Medicaid!  WTH?  FINE, I won't be a good steward of our financials then. It seems to me I should be able to decide if I need a "personal care attendant" (fancy word for MAID) but if the government wants to keep my place spankin' clean and the budget in the red what can I do?  I can't afford to pay for Medicare to make a point. Besides no one would care one iota!Someone asked me what I meant by…

  • New Math is back!

    Have Myelin?
    3 Feb 2010 | 12:41 pm
    Social Security continues to bedevil me. I finally got my SSDI but what do you know? The weasils were at it again. This time they shorted me by $29.50.  Multiply that by however many people (sheep) nationwide and you can see how much money is going amok!  Sure I can go down there and a nameless face will give me some official reason they deducted $29.50 from my SSDI and no matter what I say or do they will not budge. It is like arguing with the Pope about birth control pills. You won't win this one, so don't try. I won't waste my breath trying to get…

  • Simple Pleasures

    Have Myelin?
    2 Feb 2010 | 5:19 pm
    It is very easy to take things for granted.  Like the simple pleasure of drinking coffee on Tuesday mornings.Enjoy your coffee tomorrow. I know I will. 
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    MS Maze

  • Lie For Me

    In the midst of a 30-inch snowstorm, I felt a mixture of unearned guilt and helplessness. From the kitchen window I peeked out at my husband every so often as he labored in the wintery whiteness. Glancing around, I observed an elderly neighbor to one side and young children on the other, all tackling the [...]

  • Writing Without Periods…

    Mary and Jenny, of the blog Writing Without Periods, bestowed upon me the title of this week’s “Sensational Woman.” Thank you, ladies. Mary and Jenny are multi-published authors and observers of their own crazy lives. Life after 40 is another story!

  • Size Does Matter

    Since the dawn of time, women have been telling men that size doesn’t matter but, oh, how times have changed. Size does matter, at least when it comes to your benefits package. These days, as you stroll out into the single scene, you just might want to dangle your group health insurance card as a tantalizing [...]

  • Inside the Maze 2/5/10

    On Writing “What’s in a name? That which we call a rose by any other name would smell as sweet.” – William Shakespeare, from Romeo and Juliet Does the same hold true for blog post titles? I think not. You can write an absolutely brilliant blog post, but if no one clicks on the title, what’s the [...]

  • National Wear Red Day: A Wake Up Call to Women

    It’s not just a man thing. It’s not just an old lady thing. It’s the number one killer of women. Red is a bold color, used in this instance to serve as a wake up call to women, particularly young women. Friday, February 5 is National Wear Red Day, part of the Go Red For Women campaign [...]
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    The Myelin Repair Foundation Blog

  • Thank you Colistie & Daymon Worldwide!

    Justine Lam
    9 Feb 2010 | 8:00 am
    When MRF Evangelist, Colistie Harkness, heard about the opportunity in January to give a speech to her colleagues at the Daymon Worldwide’s Charity Showdown she followed her heart and her instincts and volunteered. This Charity Showdown was sponsored by Daymon, to promote their Toastmasters club, to encourage employees to develop their public speaking skills and to find lesser known causes to donate to. For Colistie, she was able to draw on her years of experience as a corporate trainer as well as her own experience living with MS for the event. Colistie has been described by her colleagues…

  • Research on the Blood-Brain Barrier in MS

    Justine Lam
    8 Feb 2010 | 10:20 am
    Recently, Rich Daneman, Ph.D., alum of Professor Ben Barres’ lab in Stanford took some time out of his busy schedule at UCSF to answer my questions about what the blood-brain barrier is, its role in MS, current treatment options and MRF’s latest research findings. What is the blood-brain-barrier? The blood-brain barrier (BBB) is a specialized structure formed by the blood vessels of the central nervous system (CNS) that regulates the movement of molecules and ions between the blood and the brain. The blood vessels in the brain are different from everywhere else. Our circulatory system…

  • Ensuring Scientific & Industry Relevance with Expanded Advisory Boards

    Justine Lam
    29 Jan 2010 | 12:00 pm
    Last month the MRF named five new members of its senior advisory groups: Samuel Ludwin, MBBCh, Queen’s University Kingston and Kingston General Hospital, Ontario Canada, Arnon Rosenthal, Ph.D., MazoRx Inc., Lee Rubin, Ph.D., Harvard Stem Cell Institute and Hartmut Wekerle, M.D., Ph.D., Max Planck Institute of Neurobiology in Mansfried, Germany, have been named to the Myelin Repair Foundation Scientific Advisory Board and David R. Fitzpatrick of Biotech Clarity Consulting has been named to the MRF Drug Discovery Advisory Group. “If you look at the combined scientific and industry…

  • Cleveland Clinical Trial to Begin: Mesenchymal Stem Cells Treatment

    Justine Lam
    29 Jan 2010 | 10:00 am
    We recently learned about a Phase I Clinical Trial beginning at the Cleveland Clinic using mesenchymal stem cells. This trial is based on research funded by the Myelin Repair Foundation at the laboratory of Professor Bob Miller’s at Case Western University.  Read this article to find out more information about the study. We will be anxiously following the results of this 2-year study and what it will mean for potential myelin repair treatments. Scientific journal articles: Human bone marrow-derived mesenchymal stem cells induce Th2-polarized immune response and promote endogenous…

  • Are Patents Necessary to Medical Research?

    Justine Lam
    26 Jan 2010 | 8:00 am
    Scott Johnson, founder & president of the Myelin Repair Foundation, tells us why patents are key to the medical research process, especially in attracting Pharma to discoveries and getting them closer to treatments for patients. Watch this YouTube video and share the importance of patents in the drug discovery process with others.
 
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