Six Non-Medical Issues Caused By Multiple Sclerosis

Factors that affect quality of life are not always easily visible. Here are the top non-medical issues that can impact quality of life (QoL) for those diagnosed with multiple sclerosis and their family members.

An emotional journey from the start.

The MS journal is not just a physical one, it can be an emotional one as well. Before diagnosis, there may be feelings of uncertainty and denial of symptoms. At diagnosis, patients may feel afraid, angry, wonder ‘why me?’, and become isolated. For some, receiving the label of MS can feel a burden and cause great fear in the absence of knowledge about the disease.

Understanding the disease and the disease process.

Patients need to be equipped with knowledge and coping skills to live well with MS, but doctors may be reluctant to share too much information to avoid overwhelming them. A survey study of patients and caregivers identified a desire from both groups for medical professionals to be more forthcoming with information about MS in a manner and format that is easy to understand. Patients and caregivers expressed a need to know what MS is, and what the best solution is for them personally.

Uncertainty renewed, again and again.

During the course of the disease, patients may re-experience many of the same emotions from the times of disease onset and diagnosis due to changing circumstances caused by disease activity or social challenges. Patients who visualize their most feared outcomes may have a pessimistic view of MS which in turn may amplify their symptoms and interfere with QoL.

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6 Non-Medical Issues that Affect Your Life with MS

Five Hidden Symptoms of Multiple Sclerosis

Disability progression has an obvious impact of quality of life and is often an outwardly visible sign of MS. But quality of life (QoL) in MS can be influenced by many invisible symptoms. Here are the top hidden issues that may impact quality of life for those diagnosed with multiple sclerosis.

Fatigue.

Fatigue is extremely common affecting 75 to 95 percent of people with MS. It can be one of the most troublesome symptoms regardless of one’s disease course or level of disability. The Social Security Administration recognizes fatigue as a significant cause of unemployment among people with MS. The first step in combating fatigue is working with your doctor to narrow down the cause.

Depression.

One study found that depression was the main factor affecting quality of life in MS patients, more so than disability status, fatigue, or reduced sleep quality. Depression can be caused by neurological damage associated with MS, but may also be caused by the emotional rollercoaster associated with difficult life challenges and the uncertainty of MS. Symptoms of depression may include sadness, irritability, loss of interest, sleeping too much or too little, weight loss or gain, fatigue, physical restlessness, impaired concentration, and thoughts of suicide or death. If you experience any of these symptoms, please talk to your healthcare provider.

Cognitive decline.

Cognitive issues can develop early on in the course of MS and impaired cognition can lead to a vicious cycle of frustration creating a negative impact on QoL. However, it is not always apparent whether cognitive decline is a result of depression, fatigue, neurological impairment, or a combination of factors. Patients should undergo neuropsychological evaluation so that appropriate treatment may be recommended and QoL may be protected.

Research shows that larger brain volume, cognitive reserve gained through life experience (such as years of education), and lifestyle choices (engaging in cognitive leisure activities such as reading) protect against disease-related cognitive impairment in MS patients.

Sexual (dys)function.

Sexual dysfunction, which affects up to 75 percent of women and 90 percent of men with MS, can be distressing for the patient and have a negative impact on family relationships. In fact, sexual dysfunction has been shown to have a greater detrimental effect on mental health aspects of health-related QoL in MS patients than the severity of physical disability. However, patients may be reluctant to discuss sexual dysfunction and doctors may not ask.

Reduced sleep quality.

Sleep disorders, including obstructive sleep apnea (OSA) and insomnia, are common in MS. Reduced sleep quality can lead to fatigue and depression and CPAP therapy can improve these symptoms in patients with sleep apnea. A recent study showed that sleep disorders can reduce QoL of MS patients, especially in areas related to energy and emotion. In patients with OSA, physical abilities can also be negatively affected. Due to the complex relationship between fatigue, depression, and sleep disorders in MS, it can be difficult to detect the root cause in traditional QoL questionnaires.

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Five Hidden Symptoms of MS

Quality of Life With MS Affected by Hidden Symptoms

A recent study shows that ‘hidden’ factors have the capacity to influence quality of life (QoL) for MS patients. In clinical trials, traditional measures of quality of life for MS patients center around disease activity and physical disability progression. Measuring things such as relapses and lesions is much easier than measuring non-medical issues related to quality of life; but it reflects only part of the patient’s experience.

Quality of life can be complicated. MS patients may respond well to treatment and be free of significant symptoms, but still have poor QoL due to factors such as depression, inability to work, and relationship issues. They may “look fine” but have a reduced quality of life. Conversely, patients who have accumulated significant physical disability may continue to participate fully in life and view their own QoL in a positive light.

While MS patients need to learn to cope with visible and invisible issues related to MS, discussing these issues with family, friends, or medical professionals may be difficult. Patients and providers both may be reluctant to discuss invisible issues during routine clinical visits. In addition, the problems may be complex and difficult to manage because of the lack of efficient solutions.

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Quality of Life and MS

Spammy Posts on Facebook

In the MS community, there has been an increasing number of low-quality websites that are scraping reputable material, such as that provided by MultipleSclerosis.net. The owners of these low-quality websites often create “fake” FB profiles which are used to join MS groups with the singular purpose of posting links to the scraped content.

How does this hurt the MS community?
This practice is bad for the MS community because these low-quality websites may contain ads for questionable products, have malware or viruses, and keep you from discovering relevant high-quality material on reputable websites. These spammy websites seem to exist primarily to get clicks and earn advertising fees.

I began researching several of these websites after noticing that they were being heavily promoted in certain MS-related FB groups. I have identified 46 suspicious websites whose URLs were registered, primarily in Pakistan and Panama, by fewer than 7 individuals. Some registrants have used more than one country in which to register their collection of domains. One domain owner is independently connected to 18 sites (with 9 additional sites suspected) while a group of 5 individuals seem to be connected to 13 sites between them.

The invasion is ongoing.

I have discovered that 36 of these 46 websites were created within the past three months; 18 in August and 6 in September alone. That’s a huge influx of suspicious websites trying to distract the online MS community with stolen or scraped material. In the short time since I began writing this article, 8 additional websites went up accompanied by 30 new fake FB profiles to promote them. Unfortunately, I believe that the admin(s) for a few newer MS groups that aggressively added members this summer are actually connected to this entire scam.

How can you find out who registered a website, when and where?
Every time a domain is registered, the details of that registration must be published in a publicly accessible database called WHOIS. You can go directly to a WHOIS listing by typing www.whois.com/whois/[insertyoururl.com] into a browser. However, there are ways to hide registrant information, so you may only see that the name is protected or private.

Can you spot a fake Facebook profile?
These same handful of domain owners have created at least 80 fake Facebook profiles used to promote the scraped articles published on their low-quality websites. One domain registrant has created at least 32 fake FB profiles, while another team has created 30, that are used to spam MS groups. Here’s an article on ITWorld that explains ways to spot a fake FB profile.

And, a Wordle created from information – website urls, domain registrants, their locations, and fake FB profiles – gleaned through personal research and observation regarding the WORST OFFENDERS in the MS groups:
Wordle Websites.004How can you easily find out if an article was scraped?

The easiest way to find the original article is to use Google to search for a significant portion of the text. This will often bring you directly to the original, reputable website where you may find more high-quality MS-related information.

How can you determine if a website has trustworthy health information?
The Health On the Net (HON) Foundation is a non-profit, non-governmental organization created in 1995 that “promotes and guides the deployment of useful and reliable online health information, and its appropriate and efficient use.” To receive HONcode certification, websites must go through a thorough review and approval process. Having gone through this process for my own blog that has HONcode certification, I can attest that the process is quite rigorous and detailed. Look for an active HONcode on a website.

What SHOULD you do if you notice questionable posts in your favorite group on Facebook?
You should report the post and/or fake FB profiles to the group’s administrator. You may be asked why you reported the particular post or person in question, in which case you can explain your concern; then provide a link to this article to support why you believe it’s important to keep our groups free from predators.

Pause a moment next time before you click “like” or decide to “share” something on Facebook, even if the post is very tempting with a great headline or pretty image. Please freely share links you find from your favorite, trustworthy websites such as MultipleSclerosis.net to help distribute quality information.

Please be aware that all of the information presented above focuses on what I’ve witnessed within the MS community on Facebook. Low-quality websites are being widely promoted through fake FB profiles in many other disease communities of epidemic proportions that exceed my ability to analyze by hand.

As a community of people who deal with chronic illness, we need to stick up for ourselves and help each other to think critically and push back when possible. If you see this going on in your group, please, report it and do not be prey.


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Buyer Beware: Influx of Suspicious Websites Using Stolen or Scraped Material

Alemtuzumab and Infusion Reactions

Lemtrada (alemtuzumab 12 mg) is a humanized monoclonal antibody, targeting CD52+ T and B cells, delivered by IV infusion on five consecutive days (course 1) followed by another three consecutive days one year later (course 2). Lemtrada has been approved in several countries for treatment of relapsing-remitting multiple sclerosis (RRMS) and is generally reserved for people with MS who have failed other treatments.

In clinical trials, infusion-associated reactions (IARs) affected 90.1 percent of patients receiving alemtuzumab. The most common IARs were headache, rash, fever (pyrexia), nausea, and flushing; most were mild to moderate in severity. The two main types of IARs are allergic (hypersensitivity) and nonallergic (cytokine release) reactions.

IARs were more frequent during course 1 than during course 2 of treatment; IARs occurred in 84.7-96.3 percent of patients during course 1 compared with 68.6-81.9 percent of patients during course 2. In each treatment course, the greatest numbers of IARs occurred with the first infusion and decreased with each infusion thereafter.

Management of IARs

Nurses play an important role in the detection and management of IARs. Best practices for management of IARs associated with Lemtrada include patient and caregiver education, prophylactic medication—particularly corticosteroids, antihistamines, and antipyretics—to reduce IAR severity, infusion monitoring, and discharge planning.

Severe IARs can generally be managed by slowing the infusion rate or by temporarily stopping the infusion, allowing time for recovery of symptoms, and then restarting at a slower rate.

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Prevention of Infusion Reactions with Lemtrada

Letting Go of Pre-RA Shoes

Every few months, we receive phone calls from various advocacy organizations who are looking for donations of household goods, such as clothing, books, or small appliances, to sell to raise funds for their organization. Oftentimes I agree to prepare a box or two for donation which provides a good opportunity to go through excess in our house and select items that deserve a new home.

This past week when going through stuff I focused on packing up shoes and clothing. For the clothing, it was not too difficult deciding what items to include because this time around, I chose to let go of items which I had simply grown out of. Well, not really grown out of, but rather lost weight out of. Things that simply didn’t fit anymore even with safety pins.

Choosing shoes to donate was a bit more difficult, or rather more sentimental. There were shoes in my collection that I used to wear as part of my ‘all black concert clothing’ attire. Some of these shoes were the most comfortable when I purchased them: slightly narrow width which kept them snug on my heels, a little extra arch support, low heels, and just the right amount of cushion.

These shoes were cute, and somewhat expensive. I loved them so much that I followed my mother’s advice: “If you find something that works well, and that you love, consider buying backups because they most likely won’t be available when the original pair [of shoes] wears out.”

But over the years, these ‘oh so comfortable shoes’ have become torture devices. Each time I’ve tried to wear them, I end up in such pain and with icky blisters that it’s just impossible to bear.

What has changed? Simply put….RA.

There are stories of women whose feet changed shape after pregnancy, but I’ve never been through that so I don’t have firsthand experience. I’ve heard of women whose feet changed shape simply because of age, but mine had been the same for many years.

We don’t often talk about what RA can do to the feet. Some patients may feel like they are walking on hard rocks due to inflammation in the feet. Some patients develop deformities due to damaged joints in the feet caused by the destructive power of RA.


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Saying Goodbye to Pre-RA Shoes

Remembering Events in Life Based on Health Status

In looking back on things that have happened over the years. Some may say that “life happened” as it tends to happen for most anybody as the years go on. In our lives, it’s more accurate to say that “sickness happened.”

It seems clear in retrospect that the relentless onset of MS and RA over the course of 18 months, following five years of fluctuating symptoms (such as temporary blindness, heavy legs, painful feet/ankles, achy hands, etc), changed the course of my life irrevocably. Things began to be neglected.

There’s a virtual wall between how I was able to manage life pre-MS versus post-MS. It wasn’t until my mom and I were talking about things around the house that I realized - and truly and honestly acknowledged - that life has become punctuated by health events.

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Life Punctuated by Health and Sickness

Going Without My Parking Pass

I’ve looked everywhere I can think of:

• In the car – in the normal storage spot, under the seat, between the seats, in the glovebox, backseat? Nope.
• In my purse – outside pocket, inside pocket? Nope. Check all my purses that have been used this summer. Nope.
• Where we keep the keys. Nope. Coffee table. Nope. Pile of mail. Nope.
• Rob’s car. His mom’s car (because I did go somewhere with her last month). My mom’s car. Nope. Nope. Nope.

Argh. Where is my parking pass?

I know that I had the parking pass in my car earlier this summer. I used it when my mother and I vacationed in May. I remember putting it in my purse when I valeted my car at a conference in June.

Fortunately, I don’t use the parking pass very often anymore. And when my mom is with me, her pass is usually available (when we remember it).

My current parking pass (if I could just find it) doesn’t expire until next October in 2016. That’s a long time from now and as you know with MS, you hardly can plan when you might need a little assistance by parking closer to your destination.

But having the pass in my car, not needing it, and choosing to park farther away from my destination to purposefully get more steps in for the day (as I routinely wear my FitBit One each day to roughly measure physical activity), makes me feel more confident.

My parking placard serves as a reminder that MS is not nearly as invasive as it once was in my life.

I haven’t decided what I’m going to do right now though, other than deciding to enjoy the knowledge that I’m doing well.


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What Have I Done With My Parking Pass?

Exercise Helps Urinary Symptoms in MS

One of the most common physical dysfunctions in multiple sclerosis is urinary incontinence (UI) - the leakage of urine at inappropriate times. It is also common in the general population with an estimated 115 million people worldwide reporting UI in 2013, and more than 12.6 percent of the general population in the United States being diagnosed with UI.

An estimated 50-100 percent of people with MS will experience UI. Both men and women can experience UI, but it is more common in women. UI frequently involves pelvic floor muscles that attach to the bottom of the pelvic bones to form a bowl-like structure that lifts to support internal organs and control sphincter muscles.

Lower urinary tract symptoms (LUTS) include frequency, urgency, stress and urge incontinence as well as voiding or obstructive complications. Stress incontinence occurs when the pelvic floor muscles are too weak to stop urine from leaking when you cough, laugh, or sneeze. Urge incontinence, or overactive bladder (OAB), occurs when urine leakage is closely preceded by a powerful urge to pass urine. It’s often a “I gotta go, gotta go, gotta go NOW," type of situation. Functional incontinence involves leakage when you struggle to get to the bathroom in time.

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Want to Improve Urinary Incontinence Symptoms? Try Physical Therapy

Accessing Your Medical Record

Did you know that you have a right to your medical records? It is the law. Most doctors and medical systems are now required to keep patient records in electronic format, called an electronic health record (EHR) or electronic medical record (EMR). But access to those records may not be easy and you may have to look in several places before you begin to find even a small portion of those records.

As a registered member of iConquerMS™ you are encouraged to submit EHRs to help fuel the largest patient-powered research network (PPRN) in the world to focus exclusively on multiple sclerosis.

What is an EHR?

Basically any electronic piece of information regarding your medical care can be considered an EHR. These digital records may include doctor’s notes, lab test results, MRI reports, x-rays, family medical history, prescription medications, history of surgeries, or even diagnostic and procedure codes used for insurance billing purposes.

How can I access my medical records?

• Visit summaries

Your doctor may provide you with a continuity of care document or summary at the end of each office visit which then becomes part of your medical record. To share this document with iConquerMS™, you can use your printer or a mobile app such as Genius Scan to scan it, save as a pdf, then upload it to the iConquerMS.org website.

• Paper records

You have the right to obtain a copy of your complete medical record, including doctor’s notes, but excluding notes related to mental health care. Doing so may become very expensive, however, with state-regulated charges for paper copies calculated per page. And, it is very likely that you would not know ahead of time how many pages would be included in your request. A modest 150-page record would cost $50 plus postage in Virginia.

• Patient portals

Many healthcare systems are required to offer a patient portal through which information is made available. However, the amount of information which may be easily accessed varies considerably by system. You may find full MRI reports, laboratory test results, x-ray images, or continuity of care documents, but you most likely will not find detailed doctor’s notes.

If your healthcare system uses a “MyChart” patient portal powered by Epic Systems Corp, you may find the option to download your LUCY record which provides you with “a portable copy of your allergies, medications, current health issues, test results, and immunizations from MyChart.”

Some laboratory testing companies offer patient portal services, such as LabCorp Beacon®: Patient, where you can view, download, and print test results. LabCorp is one of many health providers that connects with Microsoft®HealthVault™ which offers “secure, online storage of health information.”

• Insurance claims

Some insurance companies offer portals through which you can view and download claims information and Explanation of Benefits (EOBs). Although my company’s EOBs do not contain meaningful health information, some insurance companies may include diagnostic and procedural codes on their EOBs that provide value in a large database such as iConquerMS™.

Why should I download my medical record?

As you will quickly see, no single doctor or healthcare system has your entire medical history and some of the information you find in your search may be contradictory, outdated, or inaccurate. As the patient, it is your right to collect and compile this information into a more complete record which you can check for errors and take with you to other doctors or facilities to same time and money.

If you are able to download portions of your medical record in pdf form through a patient portal, please do so. Not just for sharing with iConquerMS™, but also to begin building a folder of medical records you can keep on your computer.

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How to Access Your EHR to share with iConquerMS