When I was diagnosed with multiple sclerosis (MS), the neurologist looked at the MRI images and said, "Based on what I see here, I think you have had MS for at least 15 years, maybe 20."
When I think back over those years, I think of all the doctors I saw in different specialties (including, but not limited to: neurologists, opthamologists, infectious disease specialists, psychiatrists, internists, orthapedic doctors, and rheumatologists). I think about the funky symptoms that came and then disappeared over those years.
Based on this, I guess my doc's estimate was about right. Maybe even the 20-year guess.
What about you? How long do you think you had symptoms before you were finally diagnosed? Leave your story in the comments section below.
I recently had the opportunity to attend a luncheon where the Richard Cohen, Meredith Viera, and their children, Lily, Gabe and Ben shared some of their emotions and experience around living with Richard's multiple sclerosis. It was encouraging, without whitewashing any of the hard realities around growing up and getting older with this disease.
I found them warm, loving and sincere. I think you will, too.
Read the full article: The Cohen Family on Life with MS
One of the worst things about MS-related fatigue is the sense of hopelessness that I feel. I am just positive that I will feel this horrible for the rest of my days.
Today was one of those days when I had an impossible amount of tasks that needed my attention and my energy level was absolutely nil, accompanied by a headache and nausea. I decided to slump over my computer to see if I couldn't produce a blog or two and I ran across this article: Julie's MS Fatigue-Fighting Tips.
Sure enough, I added some ice to my water and tried a "mini-meditation" (with a little dog curled up on my chest). This gave me enough energy to get going again on my to-do list. Take a look at the article above and give some of my tips a try.
What about you? Do you have anything that gives you a jump-start when MS fatigue is at its worst? Leave your tip or advice in the comments section below.
I have been meaning to keep a journal for a long time. I know it is supposed to help relieve stress and help me organize my thoughts and examine my emotions.
My problem has been that I don't see myself as someone who can take out a fancy notebook and a cup of tea and write down what comes into my head.
I have figured out a couple of ways to work through this mental block and put things down on paper. It is still too early to see if this is a habit that will stick, but I will admit that it felt good to do this.
Take a look at the full article and give it a try: Keeping a Journal May Help You Cope Better with MS
What about you? Do you keep a journal? What has helped you stick with it? Why do you do it? Share your tips and stories with us in the comments section below.
A study published recently in the journal Neurology presents data that goes against common belief that white women are the most at-risk population for MS.
Researchers analyzed 3.5 million patient records of Kaiser Permanente in Southern California spanning the time from 2008 to 2011. They identified 496 patients who were newly diagnosed with MS.
Here is what the data showed:
- Black people were 47% more likely to be diagnosed with MS than white patients.
- Black men and white men were equally likely to have MS.
- Black women were more likely to have MS than white women (and the difference in gender ratios between black and white patients was more pronounced in black patients).
- Hispanic patients were only about 50% as likely to have MS as white patients.
- Asian patients were 80% less likely to be diagnosed with MS as white patients.
I am trying to put together an article to give people with MS and their families fun ideas for things to do during the hot summer months.
So far, my list is a little ordinary, including things like:
- Work a puzzle
- Play a game
- Visit a museum
Just in case you are already bored and yawning, I also have some creative activities, such as holding a storytelling contest or making collages.
However, I am sure that there are some of you out there who have fabulous ideas for things to do in the summer (even outside!) that people with MS can enjoy, despite our heat intolerance.
If you have some of these ideas, please post them in the comments section below. I would really appreciate it and I'm sure others will get inspired, as well.
I have gotten a number of emails from my friends, acknowledging World MS Day, which is today, May 29th. I think it's really nice that they reach out and make that connection and I truly appreciate it. My favorites are the ones who just come out and say, "Happy World MS Day!" then follow it with a smiley emoticon and a question mark. This has been making me smile all day.
I love the fact that this day has gotten enough publicity to make people think about MS and think about their loved ones with MS. I have enjoyed these personal connections much more than all of the "calls to action" that keep landing in my inbox. Maybe next year I will take a closer look at those.
One cool way to mark this day is to come up with a personal motto about your MS or just about yourself. I have enjoyed reading some of these to see what others with MS are thinking. Check out some of these: mymotto.worldmsday.org.
What's your motto? Leave it in the comments section below and inspire others to do the same.
It's time for another informal survey. I was interested to run across a forum where people were discussing diarrhea as a side effect of Copaxone.
I have been on Copaxone for over seven years and can say that diarrhea was never one of my side effects. In one report of adverse events from the FDA, in 9,277 patients taking Copaxone, 115 report diarrhea. This equals 1.24%
Because diarrhea can be a symptom of MS, one theory might be that it is just the MS causing the diarrhea. However, in the study mentioned above, all cases of diarrhea resolved when people stopped using Copaxone.
I'd like to hear from you. Does anyone out there notice a correlation with Copaxone and diarrhea? Does the diarrhea come on quickly following the injection? Have you found any way to make this better? Don't be shy - tell us what is happening. You could help someone out there who needs to know they are not alone with this crazy disease.
We already knew this was true. However, a questionnaire-based study among 3,800 people with MS in Denmark, Sweden, Norway, Finland and Iceland has further confirmed these results and given us a little more insight.
In Denmark, one out of four people without MS tried alternative and complementary medicine (CAM) in the past 12 months. However, among people with MS, the number of people using CAM was over 50%.
Other interesting findings included:
- People with MS tended not to use CAM to address symptoms, but as an overall "preventive and strengthening element"
- Contrary to some people's popular beliefs, the people most likely to use CAM were not naive, uneducated people with no resources. Instead, the group most likely to try CAM modalities are young, well-educated women.
The researchers point out that these findings are important for doctors to acknowledge, as many of their patients are surely using CAM. I will add my own plea that neurologists learn how to listen to patients with open minds about the CAM therapies that they might be using or interested in. Otherwise, patients will use them without informing their docs. I know I have in the past.
What about you? Have you tried CAM? What has worked for you? Share your stories in the comments section below.
Read more about complementary and alternative medicine and MS:
Source: University of Copenhagen. (2013, April 23). "Data Gathered Reveals Extent Of Alternative Medicine Use By MS Patients." Medical News Today. Retrieved from http://www.medicalnewstoday.com/releases/259414.php.
Back when there was Copaxone, Rebif, Avonex and Betaseron, things were pretty easy to pronounce (although my nurse kept referring to my "Copazone" injection when she was teaching me how to give myself a shot).
Now there are more therapies, with some names that sound like words from obscure foreign languages or like you are trying to say something in English, but with a really heavy accent.
I've chosen a couple to focus on. I apologize for my non-standard pronunciation annotation in advance:
Tysabri: I think this one is pretty easy, but I have heard it pronounced "TEE-sab-rye." There is also the "tie-SAY-bree" verson, as well as a couple of others. The correct pronunciation is "tie-SAH-bree." I would not ever attempt to call it by its chemical, non-trade name, Natalizumab. Just can't do it.
Aubagio: This one is easy once you know how to say it: "oh-BAZH-io." Pretend that you are French when you say it. You can always resort to the chemical name of teriflunomide, which also takes a little practice.
Gilenya: I almost didn't know what this was the first time that someone pronounced it correctly for me: "JILL-in-ee-ya." I had been pronouncing it with a hard "g" at the beginning and not emphasizing the "y" as a syllable, so it came out "gil-EN-ya." When I said it like this, it had kind of a deep South twang to it. I think I'll continue to refer to it by it's quirky chemical name of fingolimod.
Tecfidera: Otherwise known as the much more straightforward BG-12. I'll admit that I don't know how to say this correctly. Anyone who has a clue on how to pronounce this one, please chime in.
Hope this helps. If you are still nervous about these pronunciations, do what I do - let your neurologist mention it first, then copy his or her pronunciation, even if it is wrong.