MS Diagnosis Survey

The Multiple Sclerosis International Federation is asking about your experience with getting your MS diagnosis. Results will be published and a PDF can be emailed to anyone who participates in the survey. The survey takes less than five minutes. Take it here.

Link between Shingles & MS

From the Winter 2011 NMSS Greater New England Chapter MS Connection:

“Researchers in Taiwan have reported that people who experienced an attack of the virus-triggered herpes zoster–which usually shows up as the skin rash known as shingles–were more than three times as likely to develop MS over the next year than individuals who did not have an attack.”

2011 in review

How to start blogging again after a long absence? With a meme, of course! This comes from the Friday 5.

1. In 2011, what did you do far too many times?

   Go to the hospital for doctor visits or tests. I did this way too often before finally getting a diagnosis in early Summer. I’d love to be able to say that it’s over, but apparently chronic illness means I get a few month reprieve before the series of follow-up and maintenance appointments begin.
   

2. In 2011, what did you rediscover?

   The unlimited support of my family and friends. The simple joy of hanging out and talking about a television show with my husband. My enjoyment of writing.
   

3. What 2011 event will you still be paying for in 2012?

   You know, I don’t really know how to answer this. Paying for in a monetary way? In an emotional way? A van hit my house and caused some damage that will be repaired in the Spring, but I won’t be paying for any of that. There’s nothing I regret emotionally that I’ll be paying for. The only thing I can really think of is how my MS diagnosis means that from here on out I will always be paying for expensive medications. (Let’s hear it for good insurance coverage that makes copaxone only $50/month insted of $4k.)
   

4. In what unexpected place did you find a friend in 2011?

   MS Support groups and conferences. I won’t say they are best friends or even really more than acquaintances, but it was so unbelievably nice to talk to people who get it. Not only do they get it, they live it, every single day. There was no having to pause the conversation to explain the weird symptom, there was just a lot of “hey, you know that thing…?” and someone replying with an emphatic “YES!” That’s something I won’t forget and it’s why I’m going to continue to attend these types of events.
   

5. As 2011 comes to a close, what in your life is trending upward toward a much better 2012?

   I’m getting better at controlling my symptoms, following up with doctors, taking medications, doing all sorts of exercises, relaxation techniques, and therapy. Hopefully that will get me to a place in 2012 where I’m better able to participate in life the way I want to.

In a nutshell, 2011 was full of stress. First the stress of still not knowing what was wrong with me, then the stress of having Multiple Sclerosis. In between was that brief and wonderful time of relief when I was happy to finally know what was wrong so that I could start treatment. I’d like to regain that feeling, at least part of it. and I know I can do that by continuing to take control of my illness and getting back to the things I enjoy.

How do you know when to call your doctor?

Serious symptoms now normal. [Chronic Illness Cat] What warrants doctor visit? (Source)

I didn’t write this Chronic Illness Cat submission, but I could have. Every three months a nurse from my specialty pharmaceutical provider calls to ask about my chronic illness. She has a list of questions about symptoms I may have and I generally answer them by saying “yes, but it’s nothing new.” If someone isn’t asking me about them I’m generally not paying attention to them, because these symptoms are my new normal.

So how do I know when something warrants medical treatment? How much pain is too much? How many extra muscle spasms? How much fatigue?

The answer for me is I don’t know, and I probably won’t know, so I have to place my trust in someone else. That someone for me is my MS Nurse. She’s such a valuable part of my team, maybe one of the most valuable parts. She listens to my concerns, gives me information, and, most importantly, tells me when something requires an appointment with my neurologist. I couldn’t do it without her.

Free MS Workout or MS Yoga DVD

Register with MS Active Source to get your free MS Workout or MS Yoga DVD. Note: They are affiliated with Biogen, maker of Avonex and Tysabri. When you register you agree to receive information from them. (Of course, you can type anything you want in the email and phone fields.)

National MS Society Chapter Annual Meeting

Enough stuff?

Several inches of informational and educational brochures and presentations, three water bottles, a giant cup, five bags, pens, magnets, and more cooling pads than I can wear at one time. There was a mini chocolate bar in there, too, but sadly that did not last until the picture.

The event was more fun than I expected. Because I am my mother’s daughter I chatted with a bunch of people and made a friend. (There is something wonderful about being able to speak to people who get it because they’re living it.) I attended a workshop on pain and pain management and one on fatigue and learned some things. (Big note to self: arrange to see a physical therapist!) And I ate a truly nice piece of carrot cake with cream cheese frosting.

I’m tucked away at home safe and warm before the snow comes and I am exhausted. Time to file all my information before I lose it and then relax; tomorrow is soon enough to look through it all.

College & Chronic Illness

Hmm I wonder. How many people in the chronic illness circle on Tumblr currently attend college? And how do you feel about it? And if you’ve dropped out because of an illness, what are you doing now to make a living? (via leoncillo on Tumblr)

I’m one class away from finishing my BA. One class. One horrid quantitative reasoning (statistics) class. The plan was to have finished it this past Spring. I was taking it and everything was going according to plan until I had another MS exacerbation.

The fatigue was terrible. The pain, the difficulty walking, they were all hard. But what made it impossible for me to finish that class was the cognitive difficulties I developed. Since then I had a neuropsych evaluation and realized why this was all so hard for me. While my ability stayed in the 95th to 99th percentile, my recall speed was in the 21st percentile. I can no longer multi-task, something I used to excel at. Not only can I not multi-task, I can’t have any distractions at all when trying to learn something. I have to work extremely hard to commit things to memory and even harder to pull them out of my memory when I need them.

Yeah, it’s a blow. I build a lot of my identity on my intellectual ability and on being able to help people, and now I don’t have that.

The Neuro-Psychologist was great. She gave me so many tips that will hopefully help me take and finish that one last class that stands between me and my degree. She also wrote something for my college, telling them the accommodations I need and why.

So here I am right now, trying to get SSDI after working more than half my life then having that ability taken away from me by MS. I don’t know if I will ever be able to work again but I have to hope.

Researchers Recruiting 5,000 First-Degree Relatives of People with MS for Genetic/Environmental Research Study

Researchers from the Harvard Medical School, Brigham and Women’s Hospital, and Partners Multiple Sclerosis Center are recruiting 5,000 subjects who have at least one first-degree relative with a diagnosis of MS. The goal of the study is to identify the genetic, environmental and immune profiles that may increase a person’s risk of developing MS. A first-degree relative could be a parent, sibling, or child of a person with MS, and the study is limited to those between 18 and 50 years of age. The GEMS (Genes and Environment in MS) study is led by primary investigator Philip De Jager, MD, PhD, a Harry Weaver Neuroscience Scholar of the National MS Society. The study is privately funded.

There is no cost to participate in the study, and participants can reside anywhere in the United States because no travel is required to enroll in the study. Some travel may be required for the optional MRI portion of the study and the participant will be reimbursed for travel cost.

Get more information here.

Every day.

Autoinject device (in pieces), copaxone syringe, container of pills.

Deep breath. Fresh start.

The theme for this year’s Invisible Illness Awareness Week is “deep breath, fresh start.” Boy, do I need both of those.

In May of this year, after 3-1/2 years of testing, I received a diagnosis of Multiple Sclerosis (MS). At first I was relieved. Very relieved. Early Summer was a pretty good time for me. I treated my symptoms, I began preventative medication, and a lot of my questions were answered.

But after a while it all began to wear on me. Managing chronic illness is hard and it takes all my resources just to do that. I don’t have a lot left for anything else. This year’s IIAW theme comes at just the right time for me. I hit a crisis point and I took a deep breath. Then I made a plan so I could make a fresh start.

This post barely skims the surface of my life, but right now it’s all I have to give. It’s also part of my fresh start, which is really me getting back to the basics of who I am.

Deep breath.

Fresh start.