Sometimes, It Only Hits You That You Have MS When MS Hits You
I wake up with symptoms of multiple sclerosis, I spend my day with them and I go to bed with them. For the most part I’ve learned to live my life with, around, over, and sometimes under my MS.
I guess I’ve gotten used to my new normal. Maybe that’s what makes it so much harder when MS jumps up and slaps me in the face.
Yesterday was a lovely, spring morning as I took the bus home from the Dublin train. I’d been in the capitol for a meeting of the MS & Me bloggers for MS Ireland. It was a quick trip up and I behaved myself far more than I’d expected on the eve of St Patrick’s Weekend.
Still, I was knac...
Source: Life with MS - March 14, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis Living with MS MS Fitness MS symptoms Source Type: blogs
MS Symptom Thesaurus: Isolation, a Social Side Effect
It may not be an actual symptom of the disease multiple sclerosis, but the feeling of being utterly and totally alone is real. How would you describe MS Isolation?
How time flies. We’ve been at the MS Symptom Thesaurus thing for nearly a year. For the past 11 months, we’ve covered the common symptoms of MS such as fatigue and pain and the less so – which we arguably need the most help describing – like dysphagia and nystagmus.
You can see all of our MS Symptom Thesaurus posts by either clicking here or “MS Symptom Thesaurus” in our “Popular Topics” tool bar to the right of the page.
While there are pl...
Source: Life with MS - March 12, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis dropfoot dysphagia Lhermitte’s Sign ms MS Symptom Thesaurus nystagmus Source Type: blogs
We’ve Just Been Named the No. 1 MS Community! Here’s Why
In 2010, the Media Industry News (MIN) recognized our Life With MS Blog as the best on the web for editorial content and design. All of us involved – from editors and staff to your blogger – were surprised and humbled. Last week, Sharecare, the online health and wellness engagement platform founded by Dr. Mehmet Oz and Jeff Arnold, made an announcement that took us all, again, by surprise.
Sharecare announced its Top 10 Social HealthMakers on the subject of Multiple Sclerosis – a list of the most influential people leading the online conversation about MS. According to the site:
“Social HealthMakers are a...
Source: Life with MS - March 10, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis awareness community Everyday Health life with MS Living with MS MS Blog HIstory Social Media Source Type: blogs
Attacks With Progressive MS? It’s Like Having Acne at 70!
No 17-year-old kid is happy about an outbreak of acne on the eve of a big date. But they’re at least used to it. It’s not something a couple, dressing for their 50th wedding anniversary party, usually has to worry about.
But that’s kind of how I felt this week when my “progressive” MS – you know, the kind that’s supposed to be post-inflammatory, steadily declining and WITHOUT ATTACKS – jumped up and slapped me in the face with a full-on exacerbation.
It’s been years since I’ve had such an acute onset of something new. Usually it’s just a few days or weeks of a new “thing” creeping i...
Source: Life with MS - March 7, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: multiple sclerosis acne ms progressive MS attack Source Type: blogs
Today I Can Only Type With 1 Hand and 1 Finger: MS and Feeling ‘Not Right’
Well, DAMN!
I woke this morning not feeling ‘right.’ Many of you know the feeling as well as I. By the time I got around to writing today’s blog, it got more ‘not right.’
I took my temperature to make sure it wasn’t an infection causing my symptoms. Unfortunately, it was not a pseudo thing. New symptoms have come along as well as a revisiting of old stuff.
I hope to go into greater detail later, but for now, I’m typing with my right hand and only the index finger of my left. It’s damned difficult!
So, we’ll see how long this hangs around. MS has a way of mucking with our everyday so o...
Source: Life with MS - March 3, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS symptoms Source Type: blogs
February was a Whirlwind! How’s Your MS Today?
February is nearly over and we haven’t had our monthly check-in. Sorry about that. Back-to-back-to-back storms have helped the shortest month seem even shorter.
Last month we introduced the Life With Multiple Sclerosis Self-evaluation Scale (LWM3S). It’s a simple 1-10 scale. 1= The best I’ve felt my symptoms since diagnosis with MS. 10= The worst I’ve felt my symptoms since diagnosis with MS. This is a very personal scale and allows us to gauge our symptoms relative to the whole of our disease rather than some great 1= no MS, 10= dead medical scale.
You responded with great enthusiasm and several MS pat...
Source: Life with MS - February 26, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis community life with MS Living with MS MS pain Source Type: blogs
New Blood Test May Show MS Years Before Symptoms: Would You Want to Know?
Well over a decade has passed since my diagnosis with multiple sclerosis and my symptoms have aged enough to vote. New research, due to be presented at the American Academy of Neurology meeting in April, proposes that a simple blood test may have revealed my MS while I was still in school.
According to Dr Viola Biberacher, MD, of Technical University in Munich, Germany, “…the KIR4.1 protein, a protein found in some people with MS, precedes the clinical onset of disease suggesting a role of the autoantibody in how the disease develops.”
In fact, over half of the small sample of MS patients Dr Biberacher evaluated sh...
Source: Life with MS - February 24, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis clinical trials multiple sclerosis clinical trials research Source Type: blogs
What’s Cooking, Good Looking? My MS Kitchen Needs Your Ideas and Advice
Food is fuel. Dining is entertainment. Cooking is a hobby. Any one of these simple statements (and often all three) can be negated by multiple sclerosis.
In April of this year, I’ll be presenting on the topic of food and cooking with multiple sclerosis at the MS Life 2014 conference in Manchester, England. The event anticipates over 3000 attendees and is the largest free lifestyle and information event of its kind. I am humbled and appreciative of the offer by MS Society of the UK.
The topic I’ve been given is “The MS Kitchen”.
I have a few ideas of how I might structure my presentation, and I have been d...
Source: Life with MS - February 19, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis community life with MS Living with MS Source Type: blogs
Head Versus Heart: Do Passions Fuel Good MS Science or Drive Unrealistic Hopes?
This study will add steroid therapy to the use of high-pressure oxygen to examine its result on recovery from MS attacks.
The current science on HBOT and multiple sclerosis stands as below:
“HBOT is not a cure, but there is evidence to suggest some symptomatic benefit in a majority of patients and apparent stabilization or slowing of progression in a significant fraction (17 to 33%) of those who receive continuing therapy over a period of 10 years or longer. HBOT in MS has few side effects, mostly minor.” -Richard A. Neubauer, M.D., Virginia Neubauer, and Sheldon F. Gottlieb, Ph.D. (Journal of American Physicians...
Source: Life with MS - February 10, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS treatment multiple sclerosis clinical trials research Source Type: blogs
MS ‘News’ or Malarky? And Who Decides?
A blog isn’t news, and I hope this statement doesn’t come across as too inside baseball–the press talking about the press–because I want to define our terms so we can actually talk about the news. Or in this case, the “news.”
A blog – or at least our blog – is partly a news resource, but it’s primarily part community bulletin board, part opinion column, and part interactive chat. That said, we do try to keep our eyes and ears open for the latest in the MS world.
Recent news coverage of a research breakthrough in Australia coupled with last weeks “breaking” news stories of a poss...
Source: Life with MS - February 5, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS in the news Source Type: blogs
What Is MS Doing To My Face?
I often joke that I never hear the old line, “But you look so good.” If humor is the best medicine, I guess I self-prescribe the self-effacing brand. All joking aside, however, I have been noting some real changes to my face when it comes to my MS over this past couple of weeks.
When I was first diagnosed, I experienced a numb, doughy feeling on the left side of my face as that entire side of my body came under attack. On that occasion I (and the diagnosing doctors) could see a slight slouch of my features but the heavy weigh on my face was even more obvious to me.
Now, a new sensation is playing itself out on my...
Source: Life with MS - February 3, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis Living with MS MS symptoms Source Type: blogs
Taking Copaxone? Expect a Call in the Coming Weeks
First and foremost let me say how much I absolutely abhor getting my MS pharmaceutical information via business and investment news flashes. Such was the case when I typed “FDA Copaxone formulation” into my search engine this morning.
The first full page of results was from investment sites, business analysis reviews, and pharma industry pages. I’ve grown used to getting much of my MS drug news from such sources, but today was the straw that broke this camel with MS’s back.
First, huzzah! People living with MS now have another choice in medication dosing. Particularly good for patients who hate needles is this ...
Source: Life with MS - January 31, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis drug trial MS in the news MS treatment multiple sclerosis clinical trials New Products Source Type: blogs
The Gravity of MS: When One Side Feels Heavier Than the Other
If Einstein can have a theory of “special relativity,” I think Newton should have devised a special theory of gravity’s effect on people with MS!
This morning I woke to an old but familiar feeling of my left side feeling about 40lbs heavier than my right. Even before I lifted myself out of the bed it felt as if the earth’s gravitational field was a little stronger on my sinister side.
Many of us have had the experience of feeling heavy or thick or slow on one side (or in one limb) when moving. Thought this too evidenced itself once I was vertical, I was a bit surprised to note the sensation while st...
Source: Life with MS - January 29, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS symptoms Source Type: blogs
Help! I Can’t Swallow! Dysphagia’s Panic, Our MS Symptom Thesaurus
There is one symptom of MS that sneaks up on me and quite literally grabs me by the throat. When Dysphagia – trouble swallowing – strikes, I can feel the adrenal gland kick in, my eyes widen, and a feeling of genuine panic–for my life!–arise.
These swallowing problems can be a long-term constant or, as in my case, an occasional attack. Either way, we must pay attention to this one. Aspiration Pneumonia caused by swallowing issues is a leading cause of death for people with MS; particularly in the advanced stages of the disease.
In the past few months I’ve been reading more and more comments from our...
Source: Life with MS - January 27, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis MS symptoms Multiple Sclerosis Thesaurus Source Type: blogs
High Schoolers Ask Questions About MS: You Help Me Answer!
I’ve had the opportunity and the pleasure to interview some of the most important and knowledgeable people in the multiple sclerosis world. Many were doctors and researchers who are looking for a cause and cure to this disease. Others were those living with the disease.
On occasion, I’ve even been interviewed myself. For one series of blogs we had you “interview” me.
Well, I’ve been asked for another interview, and I wanted all of us to get in on the action.
A couple of high school students in America reached out with some questions about the disease itself, living with MS, and my reaction to this stupid t...
Source: Life with MS - January 24, 2014 Category: Other Conditions Authors: Trevis Gleason Tags: MS multiple sclerosis awareness community MS and family Social Media Source Type: blogs
