Multiple Sclerosis Q & A

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Sometimes I get some very heart-warming or heart-rendering comments, especially on my About and MS Diagnosis pages at the top of this site.  I think many of people’s multiple sclerosis questions are universal and so most can relate to what is being asked.  And comments often echo what is on a majority of patients’ minds.  Here are a few recent comments and questions I’ve received. I put forth my responses, humbled that anyone would care to know them. I’m constantly in awe of others’ situations and moments of enlightenment; thanks for letting me be a part of your MS journey, and you mine:

Terri Says:

Hi there, this is probably going to sound very strange but i just dont know what to do, i feel very alone and frightened to see my doctor to ask for help. i have so many symtoms and sometimes end up telling myself its just in my head and feel like im going crazy. im only 24 but at a lose end i have blurred vision dizzy spells, extreme muscle pain and can sometimes lay awake at night with muscles tightning cramping and twitching. i’ve had a few times where a certain part of my body just tightens to the point im unable to move it for days without it seriously hurting along side all my other symtoms, but after a few days it just disapears and i feel fine again and even more confused then before! have you any advise for me as i just feel as though if i walk into my docs and say i think i have ms that i will be laughed at.

Jen Says:

Hi Terri—

I don’t think this sounds strange at all. It actually sounds like SOMETHING, but the question is “what?” Since I’m not a doctor, I would suggest that you visit your primary care physician for a work-up. That’s how many MS patients start the journey towards diagnosis. If you find your primary doctor to be unhelpful, unknowledgeable, or unwilling to refer you to a specialist, then you might want to seek out a neurologist (an MS specialist) on your own. This type of doctor is the one who can diagnose multiple sclerosis (or rule it out.) I also suggest that you continue to pursue this until you get a satisfactory, definite answer. You may change doctors a few times, but make sure that your eventual doctor takes you seriously.

And please know that there are many of us MSers and others with conditions that are here to support you, whether you have MS or not. If you seek out a local MS organization near you, you may also find contacts for good doctors and/or support networks.

I’m hoping the best for you: feel free to email me or comment again. I’d love to hear how things work out. womenzhealth@yahoo.com

Dear Jen,

A friend i met a while ago revealed to me that he has multiple sclerosis.
I never new there was such a thing.
Except maybe once, but im not sure, i watched a movie with a lady ( a know actress) that had to sit on wheal chair in the end and couldn’t move. I’m not sure if that movie was discussing MS.
Can you please explain to me more about it. Can you just give me a brief description of how he (a person dealing with MS) goes through his day. What kind of activities i can do with him that would make him feel good and keep his morals high and make him smile.
He seems to be active and even sexually active how could that be?
Does this condition keep on getting worse or can someone cure from it?
I thank you very much for your time
Love,
B

Hi B–

Lots of things….

First, everyone is different with MS. Some have relapsing/remitting disease that comes and goes, and it can cause continual damage when it strikes. Do you know if your friend has relapsing/remitting MS or progressive MS? The progressive type often takes over after years of relapsing/remitting. It is a worse kind because it keeps progressing with no remissions.

Men often have worse MS cases than women, although less men develop it. But it sounds like your friend is still mobile. Does he use any canes, crutches, a scooter, or a wheelchair? Sometimes people with MS don’t need these devices all of the time, just during attacks. It depends on the person.

People react differently to MS, depending on how severe they have it. Some are hardly affected, whereas others are severely challenged (such as the woman you saw in the movie. I’m thinking it might have been Annette Funicello, who has a very progressive form of it.) The vast majority of patients have a moderate case, where they are affected but not severely enough to be in a wheelchair. I hope this is the case with your friend. Does he work? How old is he? I myself am home on disability, but I don’t use assistive devices on good days. I do get very tired from the MS, which is a common symptom.

What you can do for your friend is ask him what would help or cheer him. Does he need help with any chores? Does he just want you to visit and spend time with him? MS can be very isolating if a patient is stuck at home. Would he like to join a support group that you could take him to? I find when people ask me what I want/need then I can be specific and not have them always guessing and wishing they knew what to do. And sometimes just being there for support is fantastic.

About the sexual activity: this is a tricky area, because many patients have problems in this realm. Due to numbness in the genital region. Not all patients have this, but sometimes males can have problems getting erections because they lack feeling in this area. It depends on the patient. Others can be mildly affected and still maintain active sex lives.

Basically MS is a disease of the central nervous system (brain and spinal cord) where the body attacks itself (autoimmune) and damages nerve coverings. This causes all sorts of symptoms like numbness, pins-and-needles, loss of function in body parts, pain, vision problems, and so on. Some of this damage can be temporary and sometimes it ends up being permanent. We currently have several medications that HELP the MS, but there is no CURE at this time. But there is a lot of research going on and the chance of a cure in the future is good.

I hope this has helped a bit. Here are some websites that may also help you and your friend. Feel free to pass my website along to your friend as well. I like to provide MS news, support, and my own MS story:

www.multiplesclerosiscentral.com
www.nmss.org (the National MS Society in the U.S.)
www.msfocus.org

Maris Says:

Thanks for the Jethro Tull interlude (music video.)  Happy holiday season!

Maris in Israel

Jen Says:

You too!

Mike Says:

My fear is that I might be fooling myself that I can handle the MS…am I kidding myself? My father- in- law had MS for 35 years and it was horrible on the family, so I can see the possibilities for me.

Jen Says:

I don’t think you’re fooling yourself. I think you are a different patient than your father-in-law and you just have to see where your path takes you. Yes, you may have a similar path as him, but it’s not a given. Thankfully MS is very individual and no two cases are exactly alike. This makes it difficult to know what will happen to you, but— JOYFULLY— you will not know what will happen and you can create your own life and live it the best that you can.

Thanks for reading, Mike, and I hope for your courage and individuality to take your life by the bullocks and LIVE.


Posted in News / Research

A Little Seasonal Music

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I’m swamped with school stuff here and the holidays are starting to bog me down, so I’m turning up the YouTube and taking a chill for a little bit. Jethro Tull is one of my favorite groups and they have an interesting, non-traditional Christmas album that I enjoy each year. Here’s one of my favorites from the album:

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Thanksgiving Blessing

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Happy Thanksgiving…Here’s an Irish blessing that I pass along to you:


“An Old Irish Blessing”

May love and laughter light your days
and warm your heart and home.
May good and faithful friends be yours
wherever you may roam.
May peace and plenty bless your world
with joy that long endures.
May all life’s passing seasons
bring the best to you and yours!

Posted in Blog

Guest Writer

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I’m getting ready for Thanksgiving and the approaching Christmas/Chanukah season, so it’s nice to hand over the reins to another writer this week. Mary Ellen Ward blogs about different health topics and she has offered this stress-reducing piece for your consideration:
“Managing MS Through the Holiday Season”

Multiple sclerosis (MS) can be a debilitating and very challenging disease to live with. For those who are afflicted, they may suffer from any number of symptoms. These symptoms can make daily life seem like a complicated process. Before you give up and feel that the traditions and life that you were once used to are gone, know that there are simple and effective ways to cope with them throughout the year. As the holidays approach, it’s important to keep in tune with your symptoms. Though MS may vary in intensity for those who are affected with it, managing the symptoms is always an important aspect of this disease. As the holidays can tend to bring about a great deal of gatherings, activities, and potentially stress, it’s important to know how to manage MS at this time of year.

Get Your Rest

Not only do you need to get a good night of sleep, but it’s a good idea to plan for a nap whenever possible. As fatigue is one of the most common symptoms associated with MS, you don’t want this to overtake you. Getting your rest is also a good idea to help with other symptoms such as muscle pain and stiffness. So whatever you are doing or wherever you are heading for the holidays, be sure to plan for some much needed rest. This can allow you to still enjoy yourself and time with loved ones, but not let MS get the best of you.

Avoid Unnecessary Stress

Though stress isn’t good for anyone, it can cause the symptoms of MS to become much more difficult to cope with. If you suffer from MS, it’s a good idea to avoid stressful situations. Any stress that you feel can make the pain associated with MS much more severe. Stress can also inhibit your ability to rest well, and this can cause a downward spiral with all of the symptoms that you suffer. Learning to manage your stress and limit your worry or concern can be a helpful tactic in coping with MS, particularly during the holidays.

Keep with Your Treatment Plan

Even if you’re planning to travel for the holidays, it’s important to keep up with your treatment plan. Take your medication as prescribed, as this is one of the most important aspects of living with MS. Be sure to pack your medication and don’t miss a dose as it can result in symptoms flaring up. If your doctor has you involved in some sort of physical activity, do your best to get it in even if it’s in a modified manner. It’s important to be diligent about keeping to your treatment plan. Though the holidays can be packed full of fun activities and it can be easy to forget, sticking to your treatment plan is essential at all times.

***Mary Ellen Ward blogs about how to choose among LPN to RN degrees.


Posted in MS and Emotions

New Non-Profit MS Anthology

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I’m looking forward to getting a copy of this new multiple sclerosis book I’ve recently discovered. Two of my favorite online writers, Diane and Joan, have been included in an MS anthology that gives patients’ stories about the trials and victories of living with multiple sclerosis. The book is Voices of Multiple Sclerosis: The Healing Companion, with more than 30 individual stories about dealing with the condition:

States Diane: “LaChance Publishing has sold books filled with the personal stories of those whose lives have been touched by breast and lung cancer, autism, Alzheimer’s, and most recently multiple sclerosis. The “Voices of…” book series is critically acclaimed, and 100% of the net proceeds go toward the foundation Debra LaChance has started. Read about The Healing Project and buy a book for yourself or a loved one who is dealing with a health condition in the book series.”

“When I was first diagnosed with MS, I searched (and purchased) any MS book I could find. I still have them all. But, with the exception of a few autobiographies, there were no stories about the experiences of regular people. I had learned the technical aspects of my new friend (multiple sclerosis), but I would have given anything for a book like The Voices of Multiple Sclerosis. Not only does it cover, in easy-to-understand terms, all the facts about MS, but it is also filled with short stories written by others with MS, as well as those who care for someone with the condition. And unlike many other books, it is light-weight and easy to hold. I couldn’t put it down until I’d read every story. I am honored to have one of my stories included in this book.”

***Voices of Multiple Sclerosis is available in bookstores, at online booksellers ( Amazon.com), in most major libraries, and at LaChance Publishing. This would make a great holiday gift for the newly diagnosed, veteran MSers, or anyone who wants to better understand multiple sclerosis.


Posted in Book Reviews, News / Research

Bringing My MS Story Up-to-Date

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I don’t have the desire to talk about MS today: I imagine a lot of patients go through such times when the disease is not in the foreground. I think people DO go through phases where the disease is raging and it is all-encompassing. Writing about it then becomes a source of release. Or it’s a new diagnosis and everything is a new discovery. Or patients have a more progressive variety and there are challenges to overcome and milestones to mark. Right now I fit into none of these latter categories. However, I have noticed that I never brought my personal MS story up to the present date, and so I’ll try to get up to speed and continue where I left off. Looks like about a year ago….

I pretty much found the attack of summer 2008 to be less severe than the attack of summer 2006. Thankfully. For some reason, I’ve only had full-blown, acute attacks since starting my disease-modifying med in 2005. I was on it regularly by 2006— after problems with the flu-like side-effects—and I have had a ceasing of small, vague attacks. The larger attacks have also become what I would call “watered down.” Thankfully. My MS is currently manageable and the attacks have become fewer with more time in between. Thankfully.

In the summer of 2008, I won my disability case. I have since picked myself back up and I’ve been volunteering at one of our county library branches for several hours a week, doing database entry for the system’s volunteer program and also processing used kids’ books for a literacy program with the county’s foster care program. This venture in particular makes my heart sing! I’ve also continued to be a library English conversation group leader for foreign-born patrons interested in bettering their conversation skills. I had to stop this for a while back in the spring of 2008, when I began to bite off more than I could chew. Thankfully I got back to it and it’s now been running since 2006. Love it and I love the patrons who remind me all the time how lucky we are to live in the U.S. (no matter the politics du jour.)

I’m now anticipating some volunteer work through our local hospital system….Just waiting for my paperwork and TB test results to come back. I like that the hospital treats volunteers with the thoroughness of actual employees. Good structure.

I’m also taking online classes through my local community college just for enjoyment. Psychology. I’m currently reading Dr. Carl Rogers’ On Becoming a Person, which tracks his thoughts on the Humanistic psychotherapy movement. I DO find it fascinating: I love to hear all sorts of takes on life and what makes it go round. Now I’m contemplating what to take in the spring. Possibly a graduate social work class. At Rutgers University. And I’ll leave the house to do it!

The freelance writing has been pretty good (although a little bumpy) this past year, but I’m grateful to be able to use one of my interests to make a little side income. Social Security Disability Insurance can be tough to live off of.

Notice this post is not so much about my multiple sclerosis, but what has developed in spite of it. The only event that marked this past year and reminded me COMPLETELY that the MS lurks in the background was a searing bladder infection in the beginning of this summer. Caused a faux exacerbation that originally felt like a full-blown attack. It wasn’t. Thankfully. So no small/vague or large/acute attacks now for almost a year and a half. My record is close to two years (between 2006 and 2008.) Now it’s autumn of 2009 and I’m about my baseline normal, which is manageable. I’m looking forward to the holidays and the arrival of oral medications in the spring of 2010. My neurologist, whom I trust with my life, has approved me for either of the first two coming out. We’ll see about insurance coverage at that time. I’m just ever-thankful that I am not only living but THRIVING with multiple sclerosis….. Sometimes it’s just the luck of the draw. And who knows why? But I feel the need to make the most of what I CAN control.

Posted in My Own MS Journey

Happy Halloween!

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Fall is one of my favorite times of the year. I’ve been very busy freaking people out with my clown costume, watching horror flicks, enjoying the beautiful autumn leaves and crisper temperatures, and making more “homestyle food.” Hope this post finds YOU well and in a lighter mood: the term “Laughter is the best medicine” is a cliche for a reason— it’s absolutely true and it never changes. Try to put the MS up on a shelf for a while and take the time to enjoy this spooooooooky season…….I know I am!!

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MS News Updates

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It’s been a bit of a crazy week here at the Jersey shore, and so I’m posting a catch-all of latest news. Hope this finds you well and happy:

Joan’s Next MS Chat Room Session: This Friday, Oct 23rd

Come enjoy a Halloween party with Joan and her fellow chatters. The session is from 7 – 9pm, Eastern Standard Time. All are welcome, and more info and login instructions are available at her blog A Short in the Cord……… Joan’s chat is THE BEST!!

Glenn Close’s Mental Health Website

I learned about this site just this morning, as actress Glenn Close and her sister Jessie told of Jessie’s long battle with bipolar disorder on ABC-TV’s The View.  Having struggled with depression since multiple sclerosis altered my life course, I am a HUGE advocate for mental health and bringing knowledge to the forefront. So many people hide their emotional problems because of embarrassment/shame, misunderstanding, and doubt. I seek the ongoing help of a social worker and a psychiatrist— I take an antidepressant— and I want to pass this helpful site on to you and anyone else you might know who is afflicted by emotional illness. There’s help and support: www.bringchange2mind.org

MS Strength has Reached its (First) Goal of $100 in Ad Revenue

It’s taken over a year, but MS Strength has reached the $100 threshold needed for Google to pay out ad revenue. 100% of the profits will be donated to the National MS Society (the U.S.), who has a high priority of using funds towards MS research. The thermometer is set back to $0, and the next donation will be made at the next $100 threshold. Thanks to those who helped the thermometer rise; it feels great to take this money and donate it to our MS cause. A future post will tell about the actual donation, as I am currently waiting for Google’s check. 🙂

A New Website for MSers Which Chronicles 5 Patients’ Journeys and Distributes Information about Disease-Modifying MS Medications

I, along with 4 other MS webwriters ( Lisa, Julie, Kimberly, and Bill) have been hired to video blog our multiple sclerosis stories—along with personal journal entries— at a new website sponsored by EMD Serono, a maker of one of the current disease-modifying MS medications and a future MS medication. The site focuses on our stories and it also provides drug information to those who subscribe. As a HUGE advocate for newly-diagnosed patients learning about and trying disease-modifying medications, I’m proud to have been tapped and I feel myself helping others to weigh their medication options, no matter what the brand and the final decision. Thanks, EMD Serono, for allowing the 5 of us to accomplish this: www.howifightms.info

A Local Piece of News About Officials “Spinning Wheels for a Day”

This story caught my eye— I found it at the Nat’l MS Society’s FB page. Interesting, and it gives those in charge a chance to see what others with adaptive devices must navigate on a daily basis. I doff my hat to you, fellow resident Jackie Jackson: The Star Ledger’s Oct 15th Middlesex County News


Posted in Fundraising Info, MS and Emotions, News / Research

The National MS Society’s Volunteer Match

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I’ve found a helpful link on the National MS Society’s Facebook page and I want to pass it along. This website— VolunteerMatch.org— links volunteer hopefuls with opportunities with the National MS Society (the U.S.) as well as with many other organizations.  Since I’ve been exploring more volunteer opps to get me out of the house, I found this site to be very useful. I even located some opportunities at my closest MS Society chapter. Have a look….


Posted in Working/Volunteering Info
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