The Financial Burden of MS

Posted on March 30, 2018 by MultipleSclerosis.net

For several of our community members, financial stress is one of the greatest challenges of living with MS. In addition to budgeting for out-of-pocket medical costs and everyday living expenses, it can be time-consuming (and sometimes stressful) to manage medical bills, insurance claims, and paperwork. Recently, we shared

about living on a fixed income, and our MS community members responded by sharing their own experiences with the financial burden of MS.

Managing Unexpected or Underappreciated Costs

“The COLA index does not reflect the expenses that the elderly or disabled must cope with.”

“Living on a fixed income, there is no way I can afford the the meds that are recommended.”

“MRIs copay with my insurance is $700. Takes me months to pay it off!”

“I need an MRI and hope this time I can afford it. Couldn’t get one last year because of the cost”

“The bills (even with insurance and a fulltime job) are tough to keep up with…. never ending”

As described by many of our community members, living with MS is costly, even for those with various forms of private insurance and/or public benefits. In a 2017 ‘Cost of Care’ survey, 77% of MS community members said that paying for care and treatment caused financial strain for their families, and over 50% of patients skipped or ‘stretched’ their medication to avoid the cost of refilling their prescriptions.¹ For many community members, the out-of-pocket costs of medications, tests, and procedures far outweigh your family’s income, especially when Cost-Of-Living Adjustments (COLAs) do not match increases in premiums. While your private insurance and/or public benefits may cover some costs, according to many MS patients, these unexpected or unappreciated costs can be challenging for you and your family to manage.

While the financial strains of MS are all too real, many of our community members have offered their own cost-saving tips for dealing with MS. While some community members recommend asking your healthcare provider about less expensive or generic medications, other suggest calling your provider’s office to see if they have any drug samples for your medications. Other patients recommend researching financial assistance programs or looking for drug coupons (often available on pharmaceutical company websites), or even ‘shopping around’ for the lowest costs for prescription drugs, tests, and procedures.^1</sup

Overcoming Stigma

“I overheard a coworker saying openly, ‘All sick people are costing healthy people too much’.”

“It’s an absolute disgrace to work all your life and pay into Social Security and then have ignorant fools saying we don’t deserve it like we’re getting billions of dollars a month…One diagnosis can change your whole world, but they don’t think it can happen to them.”

“We are sick and cannot work!”

For many patients, one of the most difficult financial burdens of MS comes in the form of shame, stigma, or judgement from other people. As many of our community members know, public benefits, such asSupplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), often fall short of the considerable costs of treating and managing a chronic condition. However, possibly due to the politics of government assistance programs, as well as a general lack of knowledge about MS, many of our community members have experienced ignorant remarks about the costs of public assistance programs, and even comments about what sick and/or disabled people do and do not “deserve”.

While it can be frustrating, angering, and downright hurtful to hear these stigmatizing remarks, only you and your family truly understand your financial situation, the challenges of MS, and what it’s like to rely on public benefits. While it’s unfair for anyone to discredit your symptoms and experiences, you may prefer to block-out these comments in favor of listening to the people who actually understand what you’re going through, such as family, friends, and fellow MS community members.

“Retirement”

“I was diagnosed in 2001 and worked up until 2013… I worked hard all of my life and loved every job that I had”

“Every day I wish I had the capacity to work”

“MS took my career and the ability to support myself… I worked hard to get an education and my career”
“I had to take early retirement due to my MS”

“Within one year of diagnosis, I was forced to quit my job. I couldn’t afford my medication because my insurance copay for it was too high and I have had severe reactions to other medications.”

For many people with MS, “retirement” has a different meaning than it does for the general population. As described by some of our community members, your MS symptoms forced you to work less or even stop working earlier than you had wanted or planned, leading to frustration, as well as financial strain. Along with the loss of income to cover your out-of-pocket medical expenses, many patients share that they miss being able to go to work and accomplish something every day, leading to emotional challenges, as well as financial ones.

If you are no longer able to work due to MS, it is important to apply for SSDI as soon as possible, given the process can take some time (see below). If you’re experiencing feelings of frustration or isolation> due to no longer working, you can also reach out to the MS community for additional help and support.

Getting Disability Benefits

“I’ve been waiting 3 years for my disability… it’s been 2 years waiting for my court date”

“SS ROUTINELY denies ALL 1st time requests – you have to hire a lawyer.”

“A confirmed diagnosis of MS should be enough [to get SSDI]”

“It took me two years to get my SSI disability benefit… I had a lawyer, but it still takes a super long time…. I was in front of a judge just to argue to get my own money”

For some of our community members, one of the biggest financial challenges of MS has been applying for Social Security disability benefits. Typically, applying and being approved for SSDI or SSI requires gathering and organizing all of your medical records, as well as coordinating with your healthcare provider so that he/she can sign-off on your request. After applying for SSDI or SSI, several community members initially received a denial, requiring them to start an appeals process. If you need to appeal a SSDI/SSI denial, many of our community members recommend hiring a lawyer or advocate to guide you on the appeals process, which usually includes a court hearing to plead your case. While your lawyer or advocate will charge a fee, many do not send a bill until after your appeal is granted. According to some of our community members, you can also contact your senator or congressperson to (hopefully!) speed up the appeals process.
For people living with MS, financial burdens can come in all shapes and sizes. While some of you are dealing with unexpected or underappreciated costs, others are facing the need to stop working, or the ignorance of others who stigmatize public benefits. If you’re experiencing financial difficulties related to MS, we encourage you to contact the MS community for help and support, and share your story today.

Works Cited

Editorial Team. “Show Me (more than) the Money! Results from the Cost of Care Survey.” MultipleSclerosis.net, Health Union, 30 Jan. 2017, multiplesclerosis.net/infographic/cost-of-care-survey-results/. Accessed 29 Mar. 2018.

Always Adjusting to Life with MS

Posted on February 26, 2018 by MultipleSclerosis.net

Recently, one of our community contributors, Nicole, wrote a thought-provoking, and emotionally charged piece titled, “Still Learning How to Live with MS.” The title of the article rings loud and true to her message within it. Nicole outlines a Sunday morning where she feels on top of the world. She feels an extra kick of energy, and a desire to take on the day. She adds more chores and errands to her to-do list than normal, and although she is questioned on this decision by her husband, she continues on with her grand plan. Throughout the day, Nicole feels great, but by early evening, she feels weariness set in. Although this is a common pattern for her at this time of day, this fatigue is heavier and consumes her more and more as the minutes tick by. She is so weary, she is unable to eat on her own, nor get fully ready for bed.

She reflects on this day and realizes that although she has been living with MS for almost 18 years, there are still days that get away from her and bring unexpected tribulations. She recognizes that, although she hates her MS, she still needs to respect its limitations and continue to learn from it. Especially when it comes to slowing things down, asking for help, and taking a break—despite what her short-term energy levels feel like. After this article was posted, comments poured in from across our community, and it became apparent that Nicole was far from being alone in her experience. Some of the sentiments shared by our community members are collected and shared below.

Always battling the fatigue

Many of our members weighed in on their constant battle with fatigue, and how although it is a constant, it can still be incredibly frustrating and knock them off of their feet (both literally and figuratively).

“I fight with myself every day. I expect myself to do more and be more than I can do or be. I never get my stuff done all the way. My fatigue is horrendous. Sometimes I get so tired, I just have to nap because I can’t do any more that day or moment and if I try to stay up, sleep overpowers me. I hate asking for help too or needing it. I feel helpless.”

“The least little thing wears me out. Tried to play with my great grandson who is 2 and a half, and it just about did me in. I was so exhausted and hurting so bad that I went to bed at 7:00pm.”

“You hit the ‘brick wall.’ Happens to me all the time. Need at least three days to recover completely.”

“It’s still difficult for others to understand what happens to me if I don’t rest…lots. The amount of energy that is needed to push myself through a day is exhausting. I explain that I can manage some things, but not all things. I have to keep reminding them of this spms that takes my strength and makes my life very different from theirs. Most do not understand the utter exhaustion.”

“So true and so hard to restrict what you do when you feel like you can do it, but pay hard for it later.”

“It’s hard being an “A” person in a “B” body.”

Constantly trying to take control when energy is high and forgetting limitations

So many of the comments shared with us revolved around trying to capitalize when energy bursts strike. Although this may be a rare occurrence, some of our members feel tempted to take full advantage of them, only to be back to extreme fatigue and pain later. Balancing energy and the desire to get things done with true physical limitations is a constant learning curve.

“Yes, it is hard to pace yourself. I have had MS formally since 1990. I try not to overdo it, but when I am feeling good, I forget and try to get everything done. We have to remember that we will pay for it later. Keep going and don’t give up!”

“Key word being ‘forget.’ Usually, I start each day with positive thoughts and energy. I can do anything until I can’t. Then I remember. Each day ends the same with fatigue and pain. And then, a new day is here to repeat itself. I do this ‘forget’ thing all the time. I need to pin a list of ‘don’ts’ on my shirt.”

“‘Sometimes I want to be like everybody else’ is what gets me in trouble every time. After 10 years you’d think I would know better, but sometimes it’s worth trying. It’s getting harder thought to push myself. I shut down quicker than I used to and just can’t do it some days no matter how much I want to.”

“Thanks for reminding me again to respect my limitations. I also forget. Your thoughts are timely because I was just saying how I’m tired of not doing much. I always want to do more and not plan so much for fear of exhausting my body to only suffer another exacerbation! My only advice to myself is to try to appreciate what I can do and find goodness in those accomplishments, as few as they may be sometimes. There is so much beauty in enjoying little things. I try to tell myself, when you slow down, you see more! Hang in there, and know you’re not alone.”

“As others, I can relate. I have learned to limit my chore or errand list and I now even literally write the word REST on my lists, so I don’t forget to take the time out. I think the still learning how to live with MS is an ongoing process for us.”

Do you feel as though you’re constantly learning from your MS? Whether it’s learning to battle fatigue, remembering and respecting limitations, or a completely different experience we didn’t mention, share with us if or how your relationship with MS is evolving.

Do You Have Irritability with MS?

Posted on January 31, 2018 by MultipleSclerosis.net

Living with MS comes with many challenges, both physically and emotionally. These life changes and demands can often lead to irritability, which happens to be one of the most common experiences that can come along with MS. Mood swings and irritability can be brought on by the physical pain and the overall toll MS is taking on the body. The stress and emotional adjustment of living with MS, as well as the treatments and medications prescribed, can all add to this exasperated and agitated state.

We recently published an article from one of our contributors, Calie Wyatt, who compared herself to the character of the Abominable Snowman from the classic movie Rudolf (the red-nosed reindeer). The character was continuously enraged and ill-tempered to those around him, but little did the others know, he was actually suffering from a horrible tooth ache, which led him to being so irritable. It was an interesting analogy to how Calie’s MS pain and fatigue would cause her to lash out at her family and friends. We received such incredible feedback from our community members about this article that we thought we would share some of their responses with you.

Pain

Sometimes irritability and belligerence are a direct reflection of the physical impairment and pain of MS on the body.

“Sometimes I feel the crankiness stems from trying to push past the pain, and live up to the expectations of others.”
“I’m not even aware of my physical misery until I become horrid and crabby…”
“It’s so frustrating having pain all the time. I have been having problems controlling my emotions.”

Fatigue

No matter what you’re dealing with, we all can get ill-tempered and irritable when we are tired or uncomfortable. However, this experience can be made worse when dealing with a chronic condition like MS.

“I get extra crabby when I am tired, and I am tired ALL the time.”
“I used to be a morning person, now it takes so much energy to get going and stay going. I try not to be grumpy, but I can’t help it.”
“I don’t have the energy for life.”
“As far as the exhaustion and fatigue are concerned, I’ve noticed its worse on days when my pain level is high because I feel my mind and body are constantly trying to cope with it and tolerate the pain.”
“I pay close attention to how tired I allow myself to become…I have total meltdowns if I push myself too far. The MIND AND THE BODY JUST SHUT DOWN. When I say I AM TIRED this means I’m DONE… I go lay down – sometimes just a short break and sometimes for the rest of the day if that’s what my body and mind needs.”
“I can relate, I am tired and irritable and can be short and snappy with people.”

Isolation and Anxiety and Depression

Living life with a chronic condition may lead an individual to stay at home more than ever before. This, along with anxiety and depression can contribute to irritability.

“Understanding that the source of our emotions may be depression can help us show ourselves grace.”
“I think my isolation makes it even worse when I do go out, and anxiety jumps into the mix.”
“While I usually never get grumpy, I do get very distant and quiet when I have a lot of pain.”
“This condition has made me a hermit!”

Personality Change

The day-to-day struggles and stress of living with MS can easily lead to moodiness and irritability that can provoke entire personality changes.

“This condition can flat out change your personality in ways that are directly opposite of who you are. I’ll make a rude comment and later wonder: what the heck is my problem?”
“I lashed out at a stranger at the market just a few days ago. I’m not normally like that.”
“I’ve been embarrassed about my behavior but finally forgave myself when I accepted that I did the best that I could at the time.”
“I’m so emotional, I can’t keep my thoughts at bay…they spew out of me so often that I annoy myself. I’m so tired! “
“I’m not the same person, I’m nasty I think. I snap a lot.”

Irritability can strike anyone at any time, and pain, fatigue and depression can all be contributing factors. However, for those living with a chronic condition like MS, irritability can come from all of these factors and so much more. When possible, try to identify what may have triggered your irritable state. If you’re able, pay attention to those things or situations that can lead you to being tense and uneasy, so you, and your friends, family, or healthcare team can try to help resolve them. If you experience any MS-related irritability, let us know how you navigate through, or if there’s anything we’ve missed!

Managing Sensory Overload

Posted on December 29, 2017 by MultipleSclerosis.net

Sensory Overload is a fairly common symptom of Multiple Sclerosis, and occurs when a person experiences overstimulation from the environment. For people with MS, Sensory Overload can sometimes make it difficult to socialize, travel, shop, and drive. This month, we asked our community members at MultipleSclerosis.net about their experiences with Sensory Overload, and how they manage this strange symptom. Have any of these strategies worked for you?

What is the relationship between Sensory Overload and MS?

Cognitive dysfunction is a common symptom of MS. Along with changes to memory, attention, problem solving, and judgement, Sensory Overload is a type of cognitive dysfunction.¹

What causes Sensory Overload?

According to our MS community members, noise, crowds, strong smells, bright lights, and other types of sensations can trigger Sensory Overload. For some patients, Sensory Overload is related to myloconous, an involuntary muscle reaction that makes many patients highly sensitive to noise.² People affected by anxiety, Sensory Processing Disorders, Autism Spectrum Disorders, and Post Traumatic Stress Disorder may also experience Sensory Overload.³

What happens when a person has Sensory Overload?

Sensory Overload can cause intense stress and confusion, and can make it difficult to think clearly, make decisions, or focus. Many MS community members experience Sensory Overload in crowded environments, such as shopping malls, grocery stores, or airports.

Community Feedback: Sensory Overload Triggers

“My friends and family love to go to Vegas. I HATE CASINOS! The noise is TOO much!!!”

“It even happens at home with the TV on.”

“Sunlight doesn’t bother me, but bright indoor light does.”

“I get so irritable with the daylight/brightness.”

“Sounds and activity and people just overwhelm me and fatigue me faster than anything!”

According to our MultipleSclerosis.net community, Sensory Overload can occur in many environments. Some patients experience Sensory Overload while traveling (such as a noisy airport), while others have trouble with bright lights, TV sounds, and radio noise. For many of you, Sensory Overload is triggered by talking: Noisy kids, people talking too loudly, multiple conversations in the same room, or people talking over one another can all lead to Sensory Overload. Keep reading for some ideas for managing these triggers!

Community Feedback: Avoid Overstimulation

“I avoid crowds or big social gatherings.”

“Noisy places, crowded places – I just have to leave.”

“I have pretty much become a homebody…I just can’t deal with all the auditory and visual noise.”

To prevent Sensory Overload brought on by crowds and loud conversations, some of our community members choose to avoid these situations all together. Especially during a relapse, you may feel like you need to stay home or spend some time alone- and that’s okay! If you feel better at home and want to avoid Sensory Overload triggers, you can always connect with friends and family through social media or the internet, or talk to your MS peers through our community pages.

Community Feedback: Limit Stress

“If I want to go to a party, I have to take a nap, wake up, drink coffee and take an Advil on the way out the door”

“Multiple conversations going on in the same room does the same thing to me.”

“Disneyland was bad…My brain gets so confused and it’s a battle to stay calm…It’s hard for me to travel to very loud busy places. Even airports can be undoing.”

To limit Sensory Overload, some community members still participate in social events, but leave when they start to feel over-stimulated. Some patients also try to avoid situations that they know will be too noisy, like by choosing a more quiet restaurant over a crowded one. If you have trouble with Sensory Overload when traveling, you may choose to visit less busy, more relaxing destinations, and if the airport is too stimulating, you could travel by car or train instead.

Community Feedback: Limit Noise

“I get overwhelmed even from the radio, grandkids when they’re being noisy, if someone talks too fast, too loud or too long….”

“I feel bad telling others they are too loud, but sometimes it hurts listens to them”

Many of our community members experience Sensory Overload when they are surrounded by excess talking or noise. If loud conversations make you feel overstimulated, consider meeting up with friends and family in quieter settings (such as at home, rather than in a cafe), or spending time with people 1-on-1. If you have friends or family members who are just too noisy, consider talking to them about Sensory Overload. While saying “You’re talking too loudly” might feel awkward, saying “Every noise feels 10 times louder to a person with MS, so I need us to be really quiet” might help people understand!

Works Cited:

Simmons, Jonathan. “MS Symptoms.” MultipleSclerosis.net, Health Union, multiplesclerosis.net/symptoms/. Accessed 16 Dec. 2017
G, Matt Allen. “Myoclonus – Why am I So Easily Startled by Sound?” MultipleSclerosis.net, Health Union, 19 Nov. 2015, multiplesclerosis.net/living-with-ms/myoclonus-why-am-i-so-easily-startled-by-sound/. Accessed 16 Dec. 2017.
McGlensey, Melissa. “21 People Describe What Sensory Overload Feels Like.” The Mighty, 11 Feb. 2016, themighty.com/2016/02/people-explain-what-sensory-overload-feels-like/. Accessed 16 Dec. 2017.

The “Common” Cold

Posted on November 29, 2017 by MultipleSclerosis.net

It’s that time of year again. Everywhere you turn, it seems like someone is sniffing, sneezing, or coughing. For most people, cold season is a nuisance, but for people with MS, cold season can be debilitating, and even lead to health complications.

Cold viruses often impact people with MS differently than the rest of the population, making cold prevention and recovery very important. This month, many in our MS community shared their experiences with the common cold and we thought you might relate as well. Do any of these sound familiar to you?

Symptoms & Recovery Time

“The past two winters, I have caught my daughter’s cold and I get hit HARD to the point I have to go to emergency and get booked into the hospital.”

“Like having life sucked out of you”

“Whenever the rest of my family gets a cold or virus, it passes within a week. When I catch it (and I almost always catch it) it lasts for weeks, PLUS I get pseudoexacerbations on top of it. No fun.”

It takes me 3 times as long to get over a cold than it does anyone else. So frustrating!”

“When I get a cold now, it lasts 2-3 weeks”

According to our MS community, the “common cold” is anything but common. While most people recover from a cold in seven to ten days¹, for MS patients, it can take much longer. According to many of our community members, cold symptoms are also more intense for people with MS, often making underlying MS symptoms more noticeable.

In addition to typical cold symptoms (such as fever, cough, congestion, body aches, and headaches¹), cold viruses can also lead to MS pseudoexacerbations, which usually last less than 24 hours and may mirror the symptoms of a full-blown MS relapse. Because a fever can trigger a pseudoexacerbation², you may want to ask your healthcare provider if over-the-counter fever reducers (such as acetaminophen or ibuprofen) are safe for you.

When You’re Surrounded by Sick People…

“Every time my parents get sick then I will catch it…I just wish they would learn about MS.”

“Unfortunately for us, even the hospital and doctor office can be risky.”

“People just don’t understand, no matter how much you explain it to them.”

I try to stay away from sick people.”

“Do NOT expose yourself to sick people. If they don’t get it, tough. Please protect yourself.”

MS is understood to be an autoimmune disorder.³ In terms of immune health, many community members have shared that MS has made them more susceptible to colds, as well as other illness. According to many of you, being around sick people almost guarantees that you catch whatever’s going around, making doctor’s offices, public transit, and even the workplace risky during cold and flu season.

For many community members, it can be difficult to avoid the cold germs, especially without accusations that you’re being “rude” or “overdramatic” when asking sick people to keep their distance. However, if you’re managing MS, your health is the priority. To stay healthy during cold season, many community members recommend avoiding sick friends, family, and strangers all together, and talking to people about how MS affects your immune system.

Cold Complications

“Sinus and ear infection, felt like I had the flu. Going on day 8. Ugh.”

“I have a cold and 2 infections right now. It can’t ever just be one thing.”

“Ear infections”

In addition to experiencing more intense cold symptoms, a longer recovery time, and increased susceptibility to the cold virus, individuals with MS are also more susceptible to infections.⁴ Common colds can spread to the ears, chest, and sinuses,⁵ leading many MS patients to experience other complications as a result of a cold, such as ear infections and sinus infections. Because MS can make it harder to fight infections, be sure to talk to your doctor if you think you’ve developed an infection, or if you experience a pseudoexacerbation lasting more than 24 hours.

Staying Healthy… or Recovering

“NO double dipping, sharing drinks, utensils, and most definitely, the cook must NOT lick the spoon the put it back…Even if your family and friends are not showing symptoms, they could have picked up something.”

“Wash your hands all day, all night, and eat tons of veggies. I drink a blender full, and it really helps. Take good care.”

“Wash your hands, don’t kiss anyone (except your honey), tons of veggies, exercise as tolerated, and get LOTS of sleep.”

As we move into cold and flu season, many of our community members have suggestions for staying healthy and cold-free, such as good handwashing, maintaining a healthy diet, and getting enough sleep. If you do develop cold symptoms, consider these tips for fighting a cold. To prevent the flu, you should also talk to your healthcare provider about getting a flu shot, especially if you are exposed to family members and co-workers who may carry the flu virus.

Works Cited

Mayo Clinic. “Common Cold.” Mayo Clinic, www.mayoclinic.org/diseases-conditions/common-cold/ symptoms-causes/syc-20351605. Accessed 27 Nov. 2017.
Editorial Team. “Is It an MS Relapse or a Pseudoexacerbation?” MultipleSclerosis.net, Health Union, 6 Mar. 2017, multiplesclerosis.net/living-with-ms/relapse-or-pseudoexacerbation/. Accessed 27 Nov. 2017.
Health Union. “What Is MS?” MultipleSclerosis.Net, Health Union, multiplesclerosis.net/what-is-ms/. Accessed 27 Nov. 2017.
Montgomery, S., et al. “Hospital Admission Due to Infections in Multiple Sclerosis Patients.” European Journal of Neurology, vol. 20, no. 8, Aug. 2013, pp. 1153-60, dos:10.1111/ene.12130. Accessed 27 Nov. 2017.
NHS. “Common Cold: Complications.” National Health Service, NHS, www.nhs.uk/conditions/common-cold/complications/. Accessed 27 Nov. 2017.

Getting a Spinal Tap When You Have MS

Posted on October 30, 2017 by MultipleSclerosis.net

Spinal taps, also called lumbar punctures, are important diagnostic tools, not only for MS, but for a multitude of neurological conditions. A spinal tap can help uncover valuable information about your nervous system. We at MultipleSclerosis.net recently posted an article by our very own Devin Garlit’s called “The Joy of getting a Spinal Tap,” in which Devin discusses his spinal tap experience during his MS diagnostic journey. It was a hit! So many of our community members responded and shared their spinal tap experiences as well so we’ve compiled some of those stories to share with you!

The Numbers

In the article, Devin describes his experience with his second spinal tap. Some people may escape the spinal tap altogether, while others may have multiple lumbar punctures throughout their lives. Many of you weighed in on the varying number of spinal taps you have endured.

“My first and hopefully final spinal tap was horrible…”
“I have had 4.”
“Had one and will never ever get another one!”
“I have had 3 and will never have another.”

The Test Itself

Some of our members described the process in terms of the test itself, and described it as fairly simple and easy. Understandably, others found it to be quite the opposite. Whether you felt your spinal tap was a walk in the park or complete misery, your experience will be unique to you. No matter how you fell about the test, your experiences are completely normal.

“Mine was a piece of cake!”
“I had a very good experience. The procedure was over in seconds and I had to lay completely still for the next hour. My wife drove me home and I spent most of the next 24 hours as vertical as possible, drinking plenty of water. I suffered no ill effects.”
“My spinal tap was the worst thing I’ve ever gone through.”
“I barely felt the needle!”
“Worst experience ever. I cried the entire time.”
“Mine was easy- peasy!”
“Worst experience of my life, hands down.”
“I was lucky. I never felt a thing. No headache either.”

The Headaches

One other interesting thing Devin shared with us about his experience was how important it can be to listen to your doctor, lay down, and avoid activity afterwards. Severe headaches after the test, often referred to as spinal headaches, can occur. The spinal headache he described was an experience so many of you shared. Some of our community members even had to have a blood patch to relieve spinal headaches afterwards.

“I was nauseated and hit with the most painful headache of my life…So my advice with spinal taps is to listen to the doctor and rest up afterwards.”
“I was told to lay as completely flat as possible the whole day. And the headaches were like a caffeine headache, so soda was kept handy.”
“I had my spinal tap on a Friday and had to live with the headache until Monday when they could do the blood patch.”
“I had a spinal headache after mine as well. I had to get a blood patch. Thankfully the patch relief was instant, but wow that is a pain you never forget.”
“I had massive headaches for days.”
“By the time I had my third lumbar puncture, I learned to demand the magic words of BLOOD PATCH immediately following the procedure.”
“My spinal tap resulted in an absolutely massive headache that I couldn’t even lift my head up (and I rested as I was in hospital). I later had to have a blood patch & the headache disappeared immediately thank goodness!”

How about you? What have your experiences been like? We’d love to hear your stories! Although spinal taps are not always a pleasant experience, they can be quite helpful when it comes to learning more about your MS. Sharing your tips and experiences on how to get through this exam can help provide relief for other members during their future tests!

Everyone Has a Unique Diagnosis Story

Posted on September 29, 2017 by MultipleSclerosis.net

Everyone living with MS has been diagnosed at different stages in their lives and each has a unique story and experience. We wanted to know more from our community members, so we asked a simple question: “At what age were you diagnosed with MS?” Not only did several hundred community members respond, but we heard bits and pieces of so many different diagnosis stories. Here’s what some of our community members told us.

Diagnosis at any age

Many of our members reported completely varying ages of diagnosis, including the following responses:

“At 24 I was diagnosed… now it’s 10 years and 4 kids later.”

“I was 29 years old, started with numbness & tingling in left foot… within a couple of days both legs were numb & tingling. After a month & a bunch of tests I was told it was MS.”

“They told me in my 20’s it might be MS, I didn’t get a diagnosis until I was 50.”

“I was diagnosed at 43 in Jan 2014.”

“For me it was two years ago at the age of 55 years old.”

“I was diagnosed at the age of 60 in 2015.”

“I was 41, but had symptoms a few years prior.”

“The official diagnosis came when I was 21”

“I was diagnosed at 52 years old.”

There is not often a direct path to diagnosis

Many of our community members have found that confirming their MS diagnosis was not a simple nor a fast process. A large portion of our community members experienced symptoms for months, years, or even decades before getting an actual diagnosis.

“I was 23, but I had undiagnosed left sided weakness and heat intolerance since about 14”

“For me it was at the age of 29, but I started showing symptoms since the age of 15. I was hospitalized for weeks because of numbness on my left side from head to toe. They ran the gamut of tests they had back then and had no idea…”

“I was 38 but took 8 years to get the diagnosis!”

“I was diagnosed at 43 years old, but I had been experiencing symptoms for at least 15 years. It almost came as a relief, because at least now I knew.”

“Diagnosed at 54, with weird symptoms for over 2 decades.”

“Symptoms at 26, diagnosed at 52.”

“Probable diagnosis at 28 … definite at 33”

“My first symptoms at 45, final diagnosis at 48, after misdiagnosing and treating sinus area pain”

Incorrect diagnoses

Diagnosing MS can be a challenging process; early symptoms can often be suggestive of several other conditions. Not only did many of of our community members report having a long journey to diagnosis, but also, having stops along the way where they were misdiagnosed, or treated for something different.

“Diagnosed at 56….it took many years as it’s a disease that masks others…they thought it was Lupus for many years”

“I was 34 but misdiagnosed for 10 years”

“I was 33 years old, but was misdiagnose with Epstein-Barr for seven years”

“I was 29 but I had been misdiagnosed with hemiplegic migraines for year before”

“At 31… Was told it was a brain tumor…”

“I was diagnosed at 19 but had symptoms my whole life doctors thought I had a stroke or diabetes or just bad migraines”

Regardless of age, the road to diagnosis may not be a direct or simple one. An MS diagnosis can come at any time in life, and can change everything. Whether you’re diagnosed at 15, 55, or 95, we’re here for you! We hope you’ll continue to share your diagnosis experiences with the MultipleSclerosis.net community.

Coping with Toxic People in Your Life

Posted on August 30, 2017 by MultipleSclerosis.net

Toxic people are completely exhausting and harmful to be around. Not only this, but they can also have a negative impact on your health. Dealing with such individuals on a daily basis is unfavorable for anyone’s health, but it can be even more damaging if you are battling a chronic condition like MS. As most of our community members realize, living with MS can make life difficult and can require a great amount support from those around you. When one’s support system becomes anything but supportive, it can have a damaging impact on your well-being. We at MultipleSclerosis.net recently posted an article about the presence of toxic people in life and how to deal with them, and received an overwhelming community response. We had such a large response, that we wanted to capture some of those experiences, advice, and stories and share them with you!

Identifying toxic people and their behavior is important

There may be individuals that shrug off your condition as unimportant or unreal. They can’t even begin to understand what you are going through. These types of people can be dismissive and compare whatever you are going through to their situation. Identifying and avoiding these people (if possible!) is key.

“I have one person very close to me that just doesn’t get it, actually refuses to believe that I have MS.”

“Dealing with this is not fun; my so called friends don’t like to talk about it or hear about what I am going through.”

“I can’t work and my ‘friends’ call me lazy.”

“I hate it when my family members say, ‘You don’t look sick.’”

“My Mom tells me when I’m having a bad day to, ‘just stop thinking about it…If you don’t think about it, it will just go away.’”

“Comment made to me by an insensitive friend ‘Everyone has their burden’…..”

“I get it all the time, I mention I am tired … they are just as tired. I mention my forgetfulness; they are just as bad. I mention my pain and theirs is worse.”

“I hate when people say, ‘I get tired, too.’”

Toxic people don’t take the time to understand

Toxic people make you feel like a burden, and are generally unsupportive. These negative feelings are expressed not only verbally, but with actions as well. These types of people don’t take the time to learn or understand what you are going through. If possible, it can be an incredibly healthy decision to avoid these individuals who don’t take the time to learn about what you’re going through, or who make you feel like you are too much effort to be around.

“My Mom met a woman with MS and said ‘she seemed ok and active…You need to be more like that.’”

“It’s so not worth saying anything to anyone because they just don’t care enough to learn about MS.”

“Somebody told me once to ‘pull myself together.’”

“They just don’t get it or even try to get it!”

“My husband has MS. His adult children refuse to see or understand how disabling his MS is. It is very frustrating”

We all know someone that is potentially toxic, and they can bring you down and affect your health and well-being. How we learn to live with these people is up to us. If at all possible, try to surround yourself with positive, supportive people who are better for your health and well-being. These individuals can make any day seem brighter and remind you that you are not alone in this. If you’re still searching for individuals like this in your life, or just want to expand on the network you have, our community is always open to new members, stories, tips, and ideas! We’re always here for you!

Where’d that Bruise Come From?

Posted on July 28, 2017 by MultipleSclerosis.net

If the walls and the furniture would stop moving I wouldn’t have any bruises

Do these words sound familiar: “Woah, how’d I do that?” or “When did I cut myself?” If so, you are certainly not alone. We recently shared an article about mysterious bruises that started quite the discussion amongst the community. With over 160 comments, it quickly became clear that unknown bruises, cuts, burns etc are a regular occurrence among many MSers, but how and why these happen is where it gets really interesting. Here’s what our community members told us!

That’s What Caused it?

While many of the bruises, cuts, bumps, scrapes, burns show up as if from nowhere, others have a very clear cause. Though sometimes it takes a while to realize what that cause is!

It took me a while to realize my bruises were from hitting my elbows on doorways to catch my balance when I was carrying the laundry basket.
I finally figured out my shin bruises were from those small carts at the grocery store. There’s a little bar across the bottom that hits my shins!
I’ll often notice a new scratch on my hands or legs and realize, a day later, it was from my cats
I can’t tell you how many times I’ve burned my hands cooking dinner and not realize it until I see the blister
We used to have a trailer hitch on our SUV. Weekly I unknowingly walked into to ball on the hitch while loading groceries. It took me MONTHS to figure out where the perfect blue circles on my knee were coming from.
What bothers me most is hitting my head as I get into the car. Like I’ve never gotten into a car before.
I thought I was in a secret fight club in my sleep lol. I wake up with random bruises all the time!
I used to wonder where a new bruise came from now I know! I’m so unsteady on my feet I bang into stuff all the time. It’s so common I don’t remember every bump!

Why Does This Keep Happening?

There are so many factors that could contribute to the increased bruising and wounds with MS.

I just fall more often now

Spasticity, muscle weakness and loss of balance are common with MS, and can cause serious gait problems and other mobility issues, such as “foot drop” or “toe drag”
And you may also be familiar with dizziness, or even vertigo, as part of the MS experience. Feeling as though the room or ground is spinning can certainly make one prone to falling

Half my body is numb

As many of you have probably experienced, numbness on body parts, or entire halves of the body, is one of the most common symptoms experienced by MSers. This is caused by damaged nerves inhibiting the transmission of sensations from the body’s surface to the brain.
And of course, when you don’t feel a bump or burn, it’s even more confusing to see a bruise!

My body is more prone to bruising and bleeding now

Some medications and that treat MS and other dietary supplements can also cause the skin to thin or lower the blood’s ability to clot, leading to an increase in bruising or bleeding
Additionally, there are other comorbidities, such as low blood platelet count or anemia, that can cause clotting issues and bruising

Ultimately, if you’ve ever had a friend ask you “What happened to your arm” or you’ve woken up in the morning to find your legs covered in fresh bruises without a clue, you are not alone!

That Ringing in My Ears….

Posted on June 30, 2017 by MultipleSclerosis.net

We recently asked our MS community about tinnitus, also known as “ringing in the ears”. Although ear-related issues are less common than other MS symptoms, many of described how the sounds of tinnitus impact their lives. Our community members pointed out several triggers for tinnitus symptoms, including stress, fatigue, loud noises, sickness, and sudden noises. If you experience tinnitus, there are ways to manage this often-treatable symptom, and know that you are not the only person with that annoying ringing in your ears!

Here are several ways that tinnitus has been described:

“I have at least 3 or more sounds at the same time”

“Mine is a high-pitched ringing like a security system in a mall”

“Sounds like a pulse, throbbing noise!”

“Loud hissing & screeching”

Buzzing, squealing, ringing, hissing, and screeching. Although many people describe their tinnitus as a high-pitched whine, tinnitus affects different people in different ways. For some of our community members, a pulsing, throbbing sound is common (this is known as pulsatile tinnitus), while others experience crickets chirping, buzzing, and screeching. Tinnitus also occurs at different volumes and intensities. While some people report a mild ‘background noise’, others explain how tinnitus sounds are so loud that their hearing is affected. Recently, experts have linked hearing and other auditory problems to nerve damage from MS, so if you experience hearing changes, you may want to talk to a doctor.

Our community members also noted:

“It makes me feel like I’m gonna go crazy”

“Noise noise noise! Affects your sanity!”

Regardless of what your tinnitus sounds like, recurring noise, especially coming from inside your body, can be annoying. When describing tinnitus, many of you shared how these internal noises make you feel ‘crazy’, ‘frustrated’, or ‘irritated’. Just like a baby screaming or fire alarm blaring, the symptoms of tinnitus can be difficult to ignore. Although many of our community members shared how tinnitus can be stressful, many of you also talked about ways to manage or drown out the tinnitus sounds…

“I use a sound machine at night and keep my fans on”

“I always put the TV or radio on for background noise”

“A little ‘white noise’ helps”

“Get cleared by an ENT first, rule out any other issues, then try some vestibular exercises”

“My neurologist sent me to an otolaryngologist who was well versed in MS. She gave me good advice”

Especially for individuals affected by MS, it’s important to get enough sleep. Our community members shared a variety of sleep-related strategies for tinnitus, including background noise (such as a fan, TV, or radio), a white noise machine, or even going to an ENT or other medical provider for treatment. For many people, tinnitus symptoms can be treated by getting the ears flushed by a doctor, changing medications, or sometimes chiropractic adjustments. Although tinnitus symptoms can be frustrating, consider trying one of these strategies to manage your symptoms, and reach out to your MS community for other ways to feel better!

“My neurologist told me that MS rarely affects the hearing”

“My neuro doesn’t believe that tinnitus is a symptom of MS”

“I think [my tinnitus is] MS related, regardless of what my neurologist says”

When describing their tinnitus symptoms, many community members shared stories of doctors and neurologists saying, “That’s not related to MS”. Although hearing impairment is a less common symptom of MS, more recent evidence shows that MS can definitely impact your ears, including tinnitus, sensitivity to noise, difficulty hearing, problems with language/auditory comprehension, and vertigo. Overall, MS symptoms are different from person to person, and many of you have doctors who agree that MS can cause tinnitus. However, even if your doctor has doubts about the association between MS and hearing-related symptoms, know that you are not alone, and consider talking to an auditory specialist or ENT who focuses on MS patients.

“Thanks for mentioning this little-known symptom”

“I have had ringing in my ears for a long time”

“Not *that* rare!”

“I’m surprised it’s rare. I’ve had it ever since my first attack in ’69”

“Wondered about this for sooooo many years”

Although medical experts often consider tinnitus a “rare symptom of MS”, for many of you, there is nothing ‘rare’ about it! When we first posted about tinnitus, many were surprised to hear that other people with MS has this symptom. As we learn more about MS together, we hope you will continue to share your experiences about the lesser known impacts of this condition, and hope you can find ways to manage your symptoms that work best for you!

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