We are pleased to present a guest post by PatientsLikeMe member Jasmine (Jazz1982), who was diagnosed with multiple sclerosis (MS) in her mid-twenties. Don’t miss this beautiful essay about the commonalities between all patients who have lost functionality – regardless of how different their conditions might seem.
I recently met someone that happened to be just like me but not in the way that I expected. I’m currently doing my master’s thesis and was interviewing an occupational therapist who had had a stroke herself. Her name is Lena, she’s 55 years old and not only has she had one stroke, but four of them. You might think this had made her “disabled,” but as with a lot of people I meet that have a chronic illness, it has only enabled her even further and made her more determined. The interview was supposed to last a maximum of 30 minutes but lasted three hours. We just couldn’t stop talking.
At this point I think I should introduce myself. My name is Jasmine, I’m 29 years old and I have multiple sclerosis (MS). To a layman’s ears, this would mean that on a random basis I lose one or more functionalities, and with medication, I might gain one or more functions back or maybe not. I’ve been one of the lucky ones, and I’ve gained almost all functionality back. A big thank you to my neurologist and rehabilitation team for helping me reach this point, and it’s a very happy point.
I’ve always been on the look out for someone just like me, give or take a few symptoms, only I was never been able to find that certain someone. That is, until Lena. I can’t say for sure how it all started but we started asking about each others’ symptoms, and I found out that she was on an MS drug for fatigue. This at first took me by surprise, an MS drug used for people who’ve had a stroke? What is this black magic that she speaks of? She went onto say that it has worked wonders for her and has made it possible for her to continue working. Then it hit me like a meteor: we might have different labels that cause our symptoms, but what difference does it make if I’m fatigued or she is? It’s all listed under the category of fatigue, and if the medicine works for me, why not for her?
The more we shared, the more fascinating the other became. We first started off with similar symptoms and then diverged into our more “unique” ones and between the both of us there were a couple of doozies! I’ll give one of mine as an example – a time came where I could not recognize faces and explaining that to people was an impossible task as they could not relate to it so I simply avoided people altogether. She has never been through it, but the basic understanding of losing a functionality that is invisible to everyone else but you is a loss that once experienced makes it familiar. Basically, monkey suffers, monkey feels.
The repercussions of this had a larger than life effect on me and saved me many a session on the therapist’s couch. Amazingly, through the exchange of our uniquely individual symptoms that were incomprehensible to the rest of the world, and after years of feeling like an outsider, I suddenly felt “normal.” Imagine that, me normal!
I’ve always been the outsider, and now I suddenly felt like I wasn’t alone.
We have this idea that only someone that has the same disease knows what we’re going through, and I can not find that to be true anymore. I believe that we are on this Earth to connect with one another, despite age, color, race or disease. Being sick is merely another factor added to the matrix of connecting with others. We’re all people bringing our unique mix of genes, environment and strategies to the table of life. It sounds like it makes things more complicated, but to me, it has widened my net and simplified things. I don’t need to categorize and filter people and go through a checklist. All of that melts away into one question: “Does he/she get it?’” Simple, tried and tested on many a person, and I would highly recommend you try it as well.
So, the take-home message would be: talk to others. They don’t have to have the same disease to know what you’re going through, they just need the basics and the understanding. And I know that everyone out there can find someone out there that is just like you. Happy hunting!
These words are dedicated to Lena, thank you!
A big thanks to Jasmine for sharing her poignant revelation with all of us. Stay tuned for more guest posts by our amazing patients!
This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the best quality of life possible. This means different things to different people as MS varies widely in severity, with approximately 15% of those diagnosed becoming severely disabled. It could include adhering to a treatment regimen, eating healthy, keeping fit, developing a support network and/or maintaining good emotional health.
It could also refer to nurturing hobbies and interests. That’s why the MSF has launched the “Show Us Your Best” contest, which calls for creative submissions (such as poems, essays, photo collages, videos, songs and more) demonstrating how people are raising awareness of MS. The deadline for entry is March 31st, and the grand prize winner will win a cruise for two on MSF’s 2013 “Cruise for a Cause” to Alaska.
With 26,000+ members, the MS community at PatientsLikeMe is one of our largest. Approximately 80% of the MS community is female (reflecting the fact that MS is at least 2-3 times more common in women than men), and slightly more than half have the relapsing-remitting form of the disease (RRMS). We also have 1,400+ patients with primary progressive MS (PPMS), 2,200+ with secondary progressive MS (SPMS) and 580+ with progressive relapsing MS (PRMS).
Some of the most commonly reported MS symptoms in our community include bladder problems, brain fog, excessive daytime sleepiness and stiffness/spasticity. What are our members taking for these issues – as well as for MS itself? From disease-modifying treatments (DMTs) like Copaxone, Avonex and Tysabri to steroids like Prednisone to symptom-specific medications like Baclofen and Modafinil, our members have submitted hundreds of evaluations for nearly all available treatment options. (Click on each drug name above to find out how they rate the effectiveness, side effects, cost and more.)
Our members are not only sharing their experiences with treatments and symptoms on their PatientsLikeMe profiles – they’re also chatting about them. A lot. To date, the MS forum room has over 786,000 posts! Some of the most frequently used forum tags are CCSVI (“The Liberation Procedure”), Low Dose Naltexone (LDN), SSDI (Disability Insurance), Fatigue, “LimboLand” and Research. (Click on each category to see what patients are saying about the topic.)
Piqued by all the knowledge found in our MS community? This is just the the tip of the iceberg – and the kickoff of our MS coverage this month. Stay tuned for more about what our MS members are sharing and learning during MS Awareness Week (March 10-17th), organized by the National Multiple Sclerosis Society (NMSS).
It’s the most wonderful time of the year. Or is it?
The holidays can be a time of merriment and joy marked by festive parties and family reunions. But they can also be quite challenging.
Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression. This phenomenon is sometimes called the “holiday blues.” Add to that things like fatigue, insomnia and seasonal affective disorder (SAD) – which affect many PatientsLikeMe members on a regular basis – and you have the recipe for a perfect holiday storm.
Here’s a look at how our patients are attempting to cope with the stresses of the season:
“Seeing all the lights, the preparations, the shopping for the holidays makes me dread what is coming. I try to go to low-key places where there isn’t as much traffic and aren’t as many people. I try to play down the importance of everything so I don’t become so obsessed with choices and opinions. I take breaks. LOTS of breaks. I try to make sure I take them before I even become overwhelmed in the first place. And I try to find free things to replace some of the costs – either as presents or activities.” – Patient with major depressive disorder
“Having family meet on a major holiday is enough to upset the emotional applecart so to speak. Try just to do an average job of cooking, it doesn’t have to be perfect. Take a break when you can…get involved in objective projects: carefully following a recipe or cooking something with your mind fully on it can help calm panic attacks. If you are doing your best, that will be the best you can do.” – Patient with Parkinson’s
“It puts a lot of stress and pressure on me. I have three children who get a lil’ demanding, and then a husband who expects me to travel with three demanding children and then stay at relatives’ tiny houses, etc. The noise, the gossip, the fake hugs from relatives who really do not like me, it all honestly just ‘gets to me.’ But this year, I’m taking my power back by saying NO to the parts of the holidays in which I do not want to participate.” – Patient with bipolar I disorder
“Sometimes I get depressed because I’m usually one of those people who have to get assistance to give their children gifts for the holidays. I also get depressed because I don’t look the way I want to (I am overweight) and do not want people to see me like that. So the gatherings can be nerve wracking for me. [But] I am learning to let go of the ‘shoulds.’ Not easy, but it can be done. If I am really not feeling up to something (I get exhausted really easily), then I allow myself to not go, or not run the thing like I used to, or only bring one thing instead of 3 or 4. Pacing myself has been a good thing to learn.” – Patient with fibromyalgia
Are you feeling signs of the “holiday blues”? Are the demands on your time and your pocketbook starting to overwhelm you? Before you pack up the car or welcome any house guests, check out these great tips from the Mayo Clinic for getting through the holidays with as much joy as possible.
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our November edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive.See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.
MONTHLY MUSINGS
“Got dishes in the sink that won’t get washed today. I just feel so worthless. I could lie down and go to sleep right now I’m so tired.”
Can you relate to this description of fatigue? Defined as a feeling of weariness, tiredness or lack of energy, fatigue is the number one symptom reported at PatientsLikeMe. It affects more than 40,000 of you and plays a role in so many different conditions, from rheumatoid arthritis (RA) to Lyme disease to ALS. What’s more, over half of you rate your fatigue as “moderate” or “severe.”
Yet fatigue can be much more than feeling tired or unmotivated. As the quote above illustrates, it can also impact your state of mind…and even your physical mobility. Many of you report fatigue can lead to depressed mood, emotional lability, demoralization, negative thoughts, anxiety, lack of concentration, brain fog and increased pain.
So, what are 40,000+ of you doing to cope with this debilitating yet “invisible” symptom? Check out the top reported treatments as well as the hundreds of treatment evaluations for medications such as Provigil, Amantadine, Nuvigil and Adderall; supplements like Vitamin B; and lifestyle modifications such as Naps (which come in particularly handy around the holidays!). You can also join in on the numerous forum discussions about fatigue to pick up tips and advice, including how some of you have tried to describe your fatigue to others using The Spoon Theory.
The first step is realizing that you are not alone. The second is learning there are things you can do from the best source of all – other patients.
Thanks for your continued feedback about improving the site. Here are our top functionality enhancements for November.
NEW CONDITION PAGES Have you seen our redesigned condition pages? They have a brand new look and feel (as the image below illustrates), and they have been re-organized to share data around five central questions. For example, what’s it like to have this condition? What do people take to treat it? We hope you enjoy and learn even more from the new layout (which, for now, you have to be logged in to see).
SYMPTOMS THAT ARE ACTUALLY CONDITIONS Back when the PatientsLikeMe platform only supported a limited number of conditions, many of you added other conditions as symptoms. With our recent site changes, you can now correctly show those “symptoms” as medical conditions on your profile, so we’ve merged them for you. For example, if osteoporosis was listed as a symptom on your profile, you’ll now find it with your other conditions. Be sure to check your condition list to make sure it’s up-to-date and accurate. These changes allow you to add more details to your condition history, and they also make PatientsLikeMe’s symptom and treatment reports more useful.
A MYRIAD OF MESSAGING UPGRADES Noticed anything different about My Messages on PatientsLikeMe (formerly called your Inbox)? Here are the recent enhancements:
Are you an email scanner? You can now see an inline preview of any new message you receive as well as view more messages on the first page.
Search, sort and click! Now, you can click anywhere (not just on the subject) to open a message, search for a subject or username, and sort your messages a variety of ways.
When you send a message, we’ll now auto-complete the “To” field with members you’ve written before, and the text box will expand as you type. (This also happens with forum replies.)
PATIENTSLIKEME POLL REVEALS UPCOMING HOLIDAY SEASON MOST DIFFICULT FOR DIABETES PATIENTS CONTROLLING BLOOD GLUCOSE
PatientsLikeMe Introduces Daily Glucose Monitoring Feature in December
CAMBRIDGE, MA – November 22, 2011 – According to a recent PatientsLikeMe® Poll, one out of every two type 2 diabetes patients (50%) and nearly two out of every three type 1 diabetes patients (65%) say having diabetes affects their holidays. More than half of respondents (59%) say the upcoming holiday season, marked by Thanksgiving and Christmas, is most difficult for controlling blood glucose; 25% don’t find the holidays difficult. When asked what strategies they use if their blood glucose rises after increased consumption during the holiday, diabetes patients had mixed responses with three in four type 1 patients (76%) changing their medication dosage, while type 2 patients try alternative things like more exercise (34%) or just avoiding glucose-raising items altogether (34%). Two hundred and twenty-six (226) diabetes patients sharing their health data on PatientsLikeMe.com responded to the poll.
“This week represents the beginning of a challenging season for diabetes patients faced with group meals and gatherings that could impact their health,” says Ben Heywood, President and Co-founder of PatientsLikeMe. “We all have family or friends with diabetes and these poll results give a glimpse into some of the challenges they face and the strategies they use to overcome them.”
Are diabetes patients sensitive about discussing their disease with family and friends at the table during the holidays? An overwhelming 90% say no. However, more than one in three patients (38%) still feel friends and family don’t understand how diabetes affects them during the holidays. With holiday meals and parties so prevalent over the next six weeks, many of the respondents (84%) say they manage with what’s available, while 16% make some adjustment to accommodate for their diabetes (7% host to be in control, 7% eat before going out and 2% bring their own meal).
PatientsLikeMe will introduce a daily blood glucose monitoring feature for its 2,000+ diabetes patients in early December. Patients will be able to report daily glucose levels, as well as continue sharing and learning from HbA1c scores (used to monitor the glucose control of diabetics over time), treatments and dosages (such as Metformin or insulin) and symptoms and severity (including blurry vision,excessive thirst and fatigue). In recognition of Diabetes Awareness Month, PatientsLikeMe recently collaborated with industry and nonprofit partners to launch the CallingAllTypes (www.callingalltypes.com) campaign in an effort to help raise awareness and funds for the disease.
NOTE TO EDITOR: The complete PatientsLikeMe® Poll results can be downloaded here. All poll results must be sourced as originating from PatientsLikeMe®.
PatientsLikeMe® Poll Methodology Between November 14th and November 18th, PatientsLikeMe invited all diabetes members to participate in the PatientsLikeMe® Poll, with 226 members completing the poll. Respondents represent patients with both type 1 diabetes (24%), where patients are usually diagnosed at a young age and need to daily blood glucose monitoring and insulin therapy, and type 2 diabetes (73%), where patients develop the condition gradually over time typically due to environmental factors resulting in increased blood glucose levels. In this poll, more than 200 respondents shared their HbA1c scores, with 49% reporting a score of 7.0 or lower (which represents well-controlled glucose).
About PatientsLikeMe® PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments. [Follow company news on www.twitter.com/PatientsLikeMe and http://blog.patientslikeme.com]
Metoprolol Succ ER (the common abbreviation for Metoprolol Succinate ER and a generic form of Toprol XL) is an extended release formulation of the drug metoprolol, which is used for the treatment of angina or hypertension and to reduce mortality/hospitalization in patients with heart failure who are already receiving cardiac and diuretic medications.
At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, 185 patients report using Metoprolol Succ ER. What can we learn from these patients’ experiences? Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform. For example, the most commonly reported duration amongst current users is two years or more, while the most commonly reported dosage at PatientsLikeMe is 50mg daily.
Wondering about Metoprolol Succ ER side effects? Some of the commonly reported side effects include loss of energy, fatigue, excessive daytime drowsiness and weight gain. Check out the 29 treatment evaluations of Metoprolol Succ ER submitted by our patients to gain even more insight. For example, the following are several tips submitted by Metroprolol Succ ER users on their evaluations:
“Remember to get up slowly. [This drug] has been making me very light headed and dizzy. Also be sure to hydrate frequently.”
“Try to take it everyday at the same time – I am really bad at this, so I’ve started taking at night.”
“When I miss a dose or two, I get an instant, awful, pounding headache on the top of my head, as my blood pressure goes through the roof, and my ears turn beet red and I can literally feel the heat coming off of them.”
“Be prepared to feel cold physically when taking this medication. Dress warmly even when in air conditioning.”
JOIN PATIENTSLIKEME TODAY
Have you taken Metoprolol Succ ER? Join PatientsLikeMe and add your experiences to our growing body of knowledge. Then, stay to exchange advice and support, research common treatments and learn from other patients like you.
With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another. Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).
Today, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.
DID YOU KNOW…
Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta).
Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.
A special thank you to all of our members for continuing to share your data and experiences to help others just like you.
Posted by Lori Piscatelli Scanlon | January 27, 2010
At PatientsLikeMe, we believe in getting to know the person, not just the patient. To celebrate the launch of the new epilepsy community this week, we sat down (virtually) with 3-star member, Blueyedgoddez. Here’s what she has to say about her experiences living with epilepsy:
(Blueyedgoddez) I have blue eyes and I sometimes feel like a goddess, as silly as that may sound. I don’t mean a goddess as in a rich snob or anything. I mean it like an earth child, that sort of thing.
(PatientsLikeMe) When were you diagnosed with epilepsy? What was that like?
(Blueyedgoddez) I had seizures since infancy, however i was officially diagnosed at the age of six. When I was a child, it was difficult in certain ways. Mostly because I knew I could never enjoy certain things that children enjoy – i.e., video games (at that time the resolution of the games were too high, the graphics would induce seizures), rollercoasters, the gravatron (at the carnival), any type of flashing party lights, among other things. As an adult, it’s not that much easier. I can’t drive under no means because where I live you need to be seizure-free for 5 years and I never am. So that’s a challenge having to depend on people or public transportation. Plus, where I work my co-workers aren’t as understanding as people were when I was a child. The people I work with tend to say I use my epilepsy not to do things. How could anyone say I use Epilepsy to my benefit? To me it’s very hurtful. It makes no sense. Also one other thing that seems to bother me as an adult is having children. I was told it’s going to be very difficult.
As you can see by now, it’s a journey having epilepsy. However, in the end, you learn to live, laugh and love – despite all your perils.
(PatientsLikeMe) How does epilepsy impact your every day quality of life?
(Blueyedgoddez) The disease in itself isn’t what really effects my day to day activities, however it’s more the side effects from the medication to treat my epilepsy. Everyday I’m bound with multiple side effects such as, fatigue, headaches, depression, anxiety, aches and pains, nausea, the list could go on. Some days I wake up fine, others not so fine. I have my good days and bad days.
(Blueyedgoddez) I joined because I didn’t want to feel alone anymore. Simply put. And I know that I could be helpful with my life experience of having epilepsy to someone else just like me, more or less. That’s why I’m here to be helped and to help others. I have a voice and I intend on using it.
(PatientsLikeMe) Thank you for using that voice and sharing your story and experiences with our community!
Did you know that yesterday was Fibromyalgia Awareness Day?
The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch! Many of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread awareness about what it’s like to live with fibromyalgia.
This sharing mirrors the sharing they do on the site. At PatientsLikeMe, members build their profiles by sharing information about their condition, such as symptoms and treatments. Top treatments cited to date include rest, heating pads, walking, stretching and the drug Lyrica. The most commonly listed symptom is pain, followed by fatigue, memory problems and lower back pain. In addition to sharing health information, patient members also share their personal experiences and tips with each other. In our forum these past few months, patients have discussed all kinds of topics, including finding the right doctor, coping with pain and fatigue and how to explain how they really feel to their friends and family.
With all this sharing, patients are learning more about themselves, helping each other better understand this condition, and improving their overall quality of life. In fact, in a recent survey amongst some of our members with fibromyalgia, 85% of our respondents agreed or strongly agreed with the statement – “I feel better about myself because of the recognition by others at PatientsLikeMe that my condition is real.”
If you are not already sharing and learning with other patients like you, we invite you to join our community here at PatientsLikeMe.
Posted by Lori Piscatelli Scanlon | April 19, 2009
It’s Parkinson’s Awareness Month. As we continue to spread the word about this condition, we wanted to tell you a little bit more about our PatientsLikeMe Parkinson’s community. Launched two years ago this month, the community has steadily grown to include more than 3,400 patients. Below are some interesting facts about the community, as well as an interview with one of our members (“PokieToo”) giving her real-world experience of living with condition.
WHAT’S IT LIKE LIVING WITH PARKINSON’S DISEASE (PD)?
Meet PokieToo. A long-time member of our PD community, she tells us how she continues to “look for the sunshine” while “taking 30 pills a day.” “Out there for the next person,” PokieToo gives us a glimpse of the real-world experiences of living with Parkinson’s disease.
DID YOU ALSO KNOW…
More than 1,500 of our patient members are 50-yrs old or older
140+ of our patient members have inherited Parkinson’s disease (PD), and a handful of people have the less common drug-induced Parkinsonism and Vascular Parkinsonism
Approximately 10% of our patient members (or 331) are Young-Onset Parkinson’s patients; that is, they report having experienced their first symptom before the age of 40.
How are our members treating their condition?
Patients are using more than 1200 treatments, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Sinemet, Mirapex, Deep Brain Stimulation/DBS and Exercise), symptoms like tremors and depression, as well as other hot issues like SSDI (Social Security Disability Insurance), the annual Parkinson’s Unity Walk, stem cells, clinical trials and research.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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Multiple Sclerosis, Openness, Share and Compare 
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