MS Strength

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

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.

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.

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