Top 5 myths about MS

Since my MS diagnosis in early 2010, I have become increasingly aware of the myths out there about life with Multiple Sclerosis – so frustrating! The list is long. At the end of this post, I include links to articles on the top MS myths, from writers over at CNN and ABC. Reading these articles inspired me to come up with my own Top 5 MS Myths, the ones that bother me the most.*

Myth 1: You will die from Multiple Sclerosis

Um, I don’t think so. This one really gets me mad, more so ever since I saw the cover of People magazine, highlighting Sharon Osborne’s reaction to her son’s MS diagnosis. Remember this? The headline read, “I won’t let my son die” and millions of Americans read about her fear that one dies from MS, as they waited in line to buy their groceries.

Sharon, let's debunk this myth!

Let’s set the record straight. According to the National MS Society, most people with MS have a normal or near-normal life. They claim that, “…only in rare cases, malignantly progressive MS can be terminal.” Our friends over at the MS Society in the UK echo this by telling us that, “People don’t die directly from MS, but if they are severely affected, the risk of dying from a complication related to MS (like an infection) is larger.”

Myth 2: MS is the same for everyone

It’s easy to quickly segment every MSer’s experience into one box of “this is what life is like with MS” but truth is, everyone’s Multiple Sclerosis is indeed different. Some of us have difficulty walking, some don’t. Some have a lot of numbness, some don’t. Some can ride a bike, some cannot. Some have mild paralysis, some don’t. Some MSers have many lesions on the brain, some have a few large ones along the spinal cord. Some have pain, some don’t. You get the idea. It’s different for everyone, kind of like a fingerprint.

MSers are like fingerprints, no two are alike

Myth 3: The MS drugs make you feel better

Man I wish this was true! The truth here is that the disease modifying drugs (or, DMDs) are designed to slow down the progression of MS, not necessarily relieve symptoms (although some claim that DMDs actually help with symptoms - this is awesome!). But not all is lost. There are options to consider that may relieve MS symptoms. Talking with your neurologist is an important first step because there are drugs available to help. For example, if fatigue is an issue, you might talk with your neuro about trying Nuvigil. Alternatively, many MSers adopt lifestyles of healthier eating, exercise and meditation to help relieve symptoms. Some even find occupational therapy useful. While this may not necessarily help with symptoms, there are certainly benefits to making MSers’ bodies stronger.

Tysabri slows down the progression of my MS but does not relieve my symptoms

Myth 4: MSers eventually require a wheelchair

This is a valid thing to worry about as some people with MS do live life with a wheelchair. It is important to highlight, however, that the majority of MSers do not become severely disabled. Here’s a stat for ‘ya, from our friends over at the MS Society in the UK, “…Two-thirds of people who have MS remain able to walk, though many will need a walking aid (such as a cane or crutches) either intermittently or permanently.”

Myth 5: MS causes people to stop working

I am an example of debunking this myth as I've been with living with MS for three plus years and work full time. I called in sick only once, on a day that fatigue hit me hard. I think it was the fifth time I called in sick in the nearly 20 years I've been with my company (gasp!). I kid. I think it was the sixth time I called in sick…

Many others also continue working after getting an MS diagnosis while others take a break and then return to work after dealing with a relapse. Some working MSers require accommodation (companies in the US are required to provide assistance for reasonable accommodation requests) while some MSers simply cannot work due to severe disability. The important thing to remember, I think, is to take your time in the decision to work or not to work.

Bonus Myth: There is a cure for MS

Me and 2.5M other MSers in this world really wish this were true. Unfortunately, there is no known cure yet we continue to have hope as doctors, researchers and others continue to research, research, research.

It’s all very frustrating, isn't  it? What tops your list as one of the biggest myths out there about MS and what can we all do to debunk it?

Take care of yourselves,

Christie

Sources:

Multiple Sclerosis Society, UK website, “What is MS? First Questions”

http://www.mssociety.org.uk/what-is-ms/information-about-ms/diagnosis/first-questions#life

National Multiple Sclerosis Society website, “What We Know About MS, FAQ’s” http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/faqs-about-ms/index.aspx

CNN inhealth.cnn.com, May 2013, “7 Myths About Multiple Sclerosis”

http://inhealth.cnn.com/managing-multiple-sclerosis/7-myths-about-multiple-sclerosis/

ABC News Go and Health.com, July 2013, “Top 10 Myths about Multiple Sclerosis” http://abcnews.go.com/m/story?id=19752065

*Disclaimer. I am not a medical professional nor do I claim to be. These are just my thoughts about things that I've heard and read through the years. If you experience any of the symptoms described here, please consult your physician and/or a neurological specialist right away. 

Another infusion without (much) incident

I just finished up round #16 of Tysabri flowing through my veins the other day. Luckily for me, it was another infusion without much incident. I know a lot of MSers have intense reactions and jot down their experiences via some sort of ‘Tysabari Diaries’ but I never really have much to write about. So my journal entries tend to be somewhat limited and this post is not much of an exception. I guess I’ll talk more about generalities of my experiences thus far with the big T.

Every month, like clockwork
(c) Christie Germans 2013

First, the infusions themselves are rather seamless.

I’ve got bouncy veins, which makes it easy for the nurse to slip in the needle to start the IV. Saline first, then the big T which flows for an hour. Then I rest for an hour so the staff can monitor me. Finally the nurse checks my vitals, unhooks everything and I go home. Every month, like clockwork, on Friday afternoons (so I can sneak out of the office early!). P.S. if I’m lucky, my “chair buddy” is there and we pass the time by chatting it up, laughing and giving each other support as Tysabri flows through our veins.

My view from the infusion chair
(c) Christie Germans 2013

Second, here is the official list of Tysabri side effects* that I do not experience. With one exception… well, maybe two exceptions:

• Hives
• Itching
• Trouble breathing
• Chest pain
• Dizziness
• Wheezing
• Chills
• Rash
• Nausea
• Flushing of skin
• Low blood pressure
• Headache
• Feeling tired
• Urinary tract infection
• Joint pain
• Lung infection
• Depression
• Pain in your arms and legs
• Diarrhea
• Vaginitis
• Rash
• Nose and throat infections
• Stomach area pain

At first glance, some of the side effects are very MS-ish. Indeed it can be difficult to decipher what is attributed to Tysabri and what is attributed to MS. I’m not always sure what is what.

One thing I am sure of is that the Tysabri side effects I’ve experienced so far include chest pain and headaches. Please do not worry. The chest pain happened only once and it was more of a very, very brief fluttering that happened in the middle of the night. I’ve already chatted with my neuro about this. I’m good.

Resting in the infusion chair
(c) Christie Germans 2013

The headaches, however, I experience during most days following an infusion. From what I understand this is fairly common. What does it feel like? A steady but light pressure and a small amount of pain. I rank it a 2 on the pain scale, if that. It’s not very intense.

And, really, that’s it. As of this writing, the infusions remain without (much) incident**.

How about you? For those of you on Tysabri, what have your experiences been like? What kind of side effects are you experiencing? And, what do you do about it?

Thanks!

Hope everyone is good,

Christie

* Source: www.tysabri.com

**Naturally, I realize the seriousness of taking Tysabri every month. It’s a very, very strong treatment and the decision to take it should not be taken lightly. I merely want to highlight that for me, the side effects have been minimal thus far. The one and very serious risk will always be PML. So long as I test negative for the JC Anti Virus, I remain hopeful that Tysabri is the right treatment for me, slowing down the progression of MS and limiting the number of relapses.

Guest Post - MS and SSD by Molly Clarke

The following post was written up by Molly Clarke, a writer for the Social Security Disability Help blog, and provides good information on how to get started in applying for benefits. There’s no denying that the process is long and complicated and, in the end, she encourages folks not to give up, “If your initial application is denied, do not panic. You can appeal the SSA’s decision. The key to being awarded benefits is to remain persistent in your efforts.” 

Thanks Molly!

If you’ve applied for SSD benefits and have tips for other MSers, we’d all love to hear from you.

Ciao for now,

Christie

Social Security Disability and Multiple Sclerosis, Molly Clarke, Social Security Disability Help blog

A diagnosis of Multiple Sclerosis (MS) can severely impact a person’s life. Because MS is a progressive disease, symptoms may not become limiting until later on in life. If you find that you can no longer work due to advanced MS symptoms, you may be eligible to receive Social Security Disability (SSD) benefits.

The following article will provide you with a brief overview of the available benefit options and will prepare you to begin the application process.

Technical Eligibility for SSDI and SSI

The Social Security Administration (SSA)—the governing body of the disability benefit programs—offers two separate benefit options. These options include Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Each of these programs has its own set of technical eligibility requirements.

• SSDI provides benefits to disabled workers and their families. This program is funded by taxes that workers pay into the system. Therefore, technical eligibility for SSDI is based on employment history and the amount taxes an applicant has paid throughout his or her career. Learn more about specific eligibility requirements, here. (http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi)
• SSI is a needs-based program that provides benefits to elderly or disabled individuals who earn very little income. To qualify for SSI, applicants cannot exceed very strict financial limitations put in place by the SSA. This program does not have any work or tax related requirements. Learn more about qualifying for SSI, here. (http://www.disability-benefits-help.org/ssi/qualify-for-ssi)

In some cases, individuals may qualify for benefits from both programs.

The MS Blue Book Listing

In addition to the previously mentioned technical requirements, applicants must also meet specific medical requirements to qualify for SSD benefits. The most basic of these requirements is to meet the SSA’s definition of disability. The SSA considers a person to be disabled if they have a mental or physical condition that prevents them from performing any type of work for at least 12 months.

After determining whether or not you meet the definition of disability, the SSA will look for specific medical symptoms. These criteria are listed in the SSA’s manual of disabling conditions, known as the blue book. Under each blue book listing you will find a list of specific, measurable symptoms that you must have in order to qualify.

You can find MS listed in the SSA’s blue book under section 11.09. According to this section you will need to meet the following criteria in order to qualify for benefits with MS:

• A marked loss of vision that cannot be corrected
• A mental impairment (such as memory loss or mood disturbance)
• Muscle weakness and fatigue
• Difficulty walking, standing, or using your hands
• Partial paralysis of your limbs, involuntary movements, or tremors

Read the entire blue book listing, here. (http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm#11_09)

If you do not meet the specific blue book listing for MS but are still unable to work, you may qualify under something called a Medical Vocational Allowance. This means that the SSA will evaluate your application and look for evidence that your symptoms prevent you from carrying out typical work activities. The SSA will also look at your age and previous training to determine whether or not it’s possible for you to be trained to learn a new occupation.

Social Security Disability Application Process

A diagnosis of MS will not automatically qualify you for SSD benefits. The SSA requires specific medical evidence that proves the extent of your symptoms and supports your claim. This may include documentation of your diagnosis, hospitalizations, medical appointments, treatments you have received, treatments you are currently receiving, and a personal statement from your doctor. In this statement, your doctor should provide details about your symptoms and how they affect your ability to perform daily activities. It is important that you collect this information prior to submitting your application.

Once you are ready to apply, you can do so online or in person at your local Social Security office. You should realize that this process can take anywhere from several months to a year to a complete. If your initial application is denied, do not panic. You can appeal the SSA’s decision. The key to being awarded benefits is to remain persistent in your efforts.

After being awarded benefits, you will be able to focus on your health rather than your financial struggles. To learn more, visit Social Security Disability Help (http://www.disability-benefits-help.org/disabling-conditions/multiple-sclerosis-and-social-security-disability) or contact Molly Clarke at mac@ssd-help.org.

Wordless Wednesday - Happy People

Not quite wordless (ha, ha!) but this is a great photo...

It's official!

Team Luca announces it will ride again in this year's Bike MS Bay to Bay Tour! Be sure to follow us on Vine where we will post videos, tracking Team Luca's progress. You are invited to join our team and/or make a donation through this link: Team Luca's official Bike MS page

Cheers!

Christie