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A Trip to the Store; Sensory Overload - MultipleSclerosis.net

Matt Allen G- It used to be so simple; “Oh no, I am out of milk”, so a quick trip to the store and I am back home with enough time to make breakfast and eat before I have to go to work. Not anymore. Let’s not even get into the whole rushing to work thing because, well, I am currently unable to hold a job. No, I want to talk about the going to the store bit. You see, it used to just be a quick walk to whatever aisle has whatever product I need and then a quick walk to the... Read more

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Donna Steigleder- About this time last week, I was experiencing discomfort in my abdomen. As the hours progressed, the pain got worse until eventually it was so intense that I was vomiting. Unable to sit up, I was lying on the floor moaning in pain with no access to help within reach. Fortunately, Lynn heard my moaning and used his emergency response button to call for help. The dispatcher was able to summons the rescue squad and contact my daughter to come to our house to stay with Lynn until his son could arrive to take over (she has a special needs child... Read more

Multiple Sclerosis Association of America - MSAA- MSAA has completely redesigned our website, mymsaa.org! The newly revised site still includes all of the same detailed information about multiple sclerosis that you’ve come to depend on as part of the MS community. Check out the new revitalized look and feel at mymsaa.org! Created with our audience in mind, the new website at www.mymsaa.org has been designed to be compatible with today’s browsers and mobile devices allowing for easier access to all of our vital information and resources. Notable highlights of the newly-redesigned website include: An updated homepage with enhanced graphics and links to essential resources and topics such... Read more

Devin Garlit- February will always be an important month to me. Sixteen years ago, on Groundhog Day, I was officially diagnosed with multiple sclerosis. It’s a day that changed not only my life, but the lives of everyone in my entire family. While it’s been a long and, at times, painful road for all of us, I still celebrate this anniversary, this MSiversary if you will, every year. It’s become a much bigger day to me then my birthday or any other holiday. While many might see this as a day they’d love to forget, I like see this as a day of hope and... Read more

Laura Kolaczkowski- A number of you have talked about being both the person living with multiple sclerosis and are a caregiver for someone else. Recently I also shared this dual role. Normally my spouse and I with our own medical needs are able to take care of ourselves but his health had a couple major interruptions recently that forced that role to change. The month of December found him feeling sluggish and worse, and eventually I took him to the emergency room where he was diagnosed with pneumonia and hospitalized for four days. I was able to be there and observe the system from... Read more

Lisa Emrich- My journey with MS has had some significant ups and downs. Some of the downs include blindness, complete loss of use of two fingers on my left hand (which is devastating to a classically-trained pianist and teacher), weak arms and legs, all over numbness, impaired balance, fatigue, spasticity, anxiety, and depression. I’ve been enjoying more of the ups in recent years; really since I switched medication to rituximab (a monoclonal antibody therapy used for RA, lymphoma, and other autoimmune diseases, which should be released in a new form and approved for MS sometime in the next year as ocrelizumab). After... Read more

Laura Kolaczkowski- It was announced February 17, 2016, that the drug, ocrelizumab made by Roche and Genentech pharmaceutical companies, has been given Breakthrough Therapy Designation for the treatment of primary progressive MS by the Food and Drug Administration (FDA). Ocrelizumab studies Opera and Oratorio had positive results in treating a certain population of people with MS who were fairly early in their progression state and also in relapsing forms of MS. Ocrelizumab is the first investigation medicine to receive Breakthrough Therapy Designation, according to information from Genentech. This news created much excitement back in Fall 2015 at a world gathering of MS specialists,... Read more

Laura Kolaczkowski- The MS community was lit up in Fall 2015 about the news of ocrelizumab and its use in treating primary progressive MS – there was excitement everywhere with the thought that finally a treatment for this form of MS had  been proven effective. The  bright focus of the headlines quickly waned and we did not hear anything about this wonder drug until this week’s announcement by the Food and Drug Administration that Genetech and Roche, that the manufacturers of ocrelizumab, have received Breakthrough Therapy Designation, and will seek quick approval. The  public discussion of treatment options for people with progressive forms of MS... Read more

Lisa Emrich- The road to diagnosis for MS can be long and winding for many patients. I’m happy for patients who receive their official diagnosis within just a few doctors’ visits. Not happy that they have MS, but happy that they can jump right in and get on with things; attacking the beast with medication, therapy, and determination. For those of us who are not immediately diagnosed with MS, the feelings involved with the ‘not knowing for sure’ can be frustrating. Especially disturbing is when you suspect that your doctors do not believe you or your symptoms. The worst part may be... Read more

Stephanie Buxhoeveden, RN, MSCN- Most of us are pretty well versed in the variety of symptoms that MS can cause, mostly thanks to our vast first-hand experience. I also have the advantage (or disadvantage depending on the day) of working in Neurology, so I know the anatomy and physiology behind all those peculiar MS symptoms. Throughout the years there have been several occasions where my expertise as a patient defy or even directly contradict my expertise as a clinician. For instance certain symptoms are thought to typically only happen in more advanced MS, or once a person has lived with it for a really long time.... Read more

Kim Dolce- Multiple sclerosis distinguishes itself in many ways, not the least of which is its odd collection of physical reactions to the scraping, poking, hammering and prodding by our doctors during a neurologic exam. Lhermitte’s sign, Babinski response, and Uhthoff’s phenomenon are well-known terms. We might forget which is which sometimes, so here’s a reminder of what weird thing goes on where in the body when certain things happen. Uhthoff’s Phenomenon occurs when a rise in body temperature causes MS symptoms to temporarily worsen. Worsened eyesight in those of us with optic neuritis is a very common manifestation, causing vision to blur... Read more

Donna Steigleder- With Relapsing Remitting MS (RRMS), Lynn would have an exacerbation that could last days or weeks, but he would return to “normal” at some point and nothing much changed. With Secondary Progressive MS (SPMS), he stopped getting better. He happened to be in a clinical trial at the time he transitioned to SPMS so he was seeing his doctor every three months and getting the full court press evaluation. We started noticing that his scores were getting worse over time without any evidence of having had an exacerbation. He was not walking as far and his strength was less. Response times to questions got... Read more

Matt Allen G- “I’m confused, I’ve seen 3 or 4 neurologists, including VA Neurologists and they all keep saying that MS is a women’s disease. The VA Neurologists did MRIs of my lower back, neck and brain, all without Contrast … the only one with Contrast they did was the brain, they tried to tell me Contrast doesn’t really show anything … I had a white spot and they said that those are normal, everyone has those and that I don’t have MS. I can’t seem to get any help, and it’s so frustrating. Any suggestions?” This is a comment I got on... Read more

Kim Dolce- In most ways, my life this year will be very much like it was last year except for one thing: I’ve decided to pull a Mary Poppins and stop explaining myself so darn much. Here’s my source of inspiration: Mr. Banks: Just a moment, Mary Poppins. What is the meaning of this outrage? Mary Poppins: I beg your pardon? Mr. Banks: Will you be good enough to explain all this? Mary Poppins: First of all, I would like to make one thing quite clear. Mr. Banks: Yes? Mary Poppins: I never explain anything. [exits] In my rather dim memory... Read more

Laura Kolaczkowski- Of the many drugs we would like to see, one that remyelinates the nerves (repairs the damage done by MS) may be getting closer and our bodies will improve, but will we be ready when that time comes? The goal of these drugs will be to restore function but we will have to build on what muscles we have retained while we are waiting for that time. A while back I sat in on a telephone conference with Dr. Ben Thrower, Shepard MS Center, who was conducting a teleconference session for the Multiple Sclerosis Foundation (MSF). I really liked listening to... Read more

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I’m 45 and was diagnosed with PPMS (only) a year ago. Looking back, hindsight being a wonderful thing, the signs have been there for probably 10 years or more but only really started to take a real hold in the last 2. One of the hardest things apart from the frustration of not being able to do the things I once took for granted, are the ever changing ways MS likes to beat me up. Every day starts with a series of questions, what is going to work today? Are my legs going to carry me downstairs without having to... Read more

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