The effects of Multiple Sclerosis touch daily activities, care givers and intimacy with spouse from Brokers Alliance on Vimeo.
The first signs of Multiple Sclerosis: dizziness, blurred or double vision –No family history-MS is not a death sentence.
This is a video of a radio interview with Susan Kelly, an RN who has MS and volunteers with the National MS Society, with some great stuff coming out. They talk about how a diagnosis of MS is definitely preferable to a brain tumor, how to “manage your energy bank,” and how she and her family manages her MS. She keeps a very positive and humorous attitude and it’s really awesome to hear!
Honestly I’m not sure if this is a good idea, but the day before yesterday someone emailed me through my “Contact Me” page and my reply email isn’t getting through to her email, so I’m posting my reply here. I want her to have this information and I don’t know how else to get it to her if I can’t email her. I would probably give similar advice to anyone who was wondering about MS or if they might have it, so maybe it’ll help someone else out there.
Thanks for reaching out. I can’t even imagine how frustrated you must be.
I’m not a medical professional, but yeah, your symptoms sound familiar. What tends to really define MS, though, is the presence of sclerosis (white plaques or scarring) in your brain, so if nothing is showing up on your MRIs I’d probably assume it’s something else. Only 5% of the population generally ends up with a false negative or a false positive. When was the last time you had an MRI of your brain? You said the neurologist sent you for one of your back? Were you experiencing weird things going on at the time of your MRI, or had the symptoms subsided already? Continue reading
I recently had a chat with my massage therapist about these headaches I get behind my eyes. Before this conversation, I would freak out every time I got one of these headaches (which was a lot) because every time I’ve had optic neuritis it started with one of these headaches. Luckily, my massage therapist had another option for me, so now I don’t need to freak out every time one of these headaches pops up! They can be muscle related, and in this video I explain all about it.
In this video I talk about the cognitive impairment associated with my MS, and how it’s helped me take myself less seriously while (weirdly) improving my methods of goal setting. Watch it and let me know what you think by clicking the “comments” link below.
So it probably sounds strange, to hear me say “I like having MS” but just watch the video. It’s more correct to say I can appreciate certain things about living with MS. I think we create a lot of our experience by the way we choose to look at things, at situations and circumstances. I think we have control over how we look at things, even if we may not control those things themselves. I know my attitude helps me get through things that used to be very, very difficult for me to face. I just needed to look at things differently.
What about you? Do you notice a difference in your energy levels when you’re in a great mood versus when you’re in a crappy one? I don’t mean a “good day” versus a “bad day” physically. I know I can have exactly the same symptomology two different days, the first one can be h*ll to get through and the second one easier just because I’m in a bad or good mood over something else.
I heartily agree with what Christopher Jacoby has to say in this post. Take a look, read my comments after the post, and let me know what you think by leaving a “comment” of your own:
The first step in being prepared to deal with people reactions of your Multiple Sclerosis is by understanding your own condition. If you want people to understand your health problem, you’re the one that should educate them. Continue reading
This is my first video interview about this site and why I set it up. I’ve been told that “First is Worst” and it can only get better from here, so I’m hopeful! It was recently pointed out to me that many people with MS develop issues with their vision, so I thought a videoblog would be a better medium of communication (I can’t believe I didn’t think of that, since Optic Neuritis was my first and is one of my recurring symptoms) so I’m going to make an effort to do more videoblogs or at least add audio to the articles.
What’s your opinion? Please share! Click on “comments” link below.
In October 2008 I was diagnosed with relapsing/remitting multiple sclerosis after a series of three overlapping attacks earlier that summer. I was “lucky” because my initial MRI showed “textbook perfect presentation” of the plaques in my head (“Doctor, what’s that golf-ball looking thing doing at the bottom of my brain?”) so I didn’t need a spinal tap or any other really invasive procedures for an official diagnosis. Luckily, my diagnosing physician gave me the opportunity to become involved in a stage 2 clinical trial for a drug called Ocrilizumab, so I’ve never been on a beta-blocker like Avonex or any other self-injectable. My medical treatment has consisted of full-day infusions with steroids and the trial drug, once every 6 months for 2 years, and now I’m in an observation phase. I haven’t had a major attack since starting treatment! Woohoo! I am very blessed to have almost no physical symptoms, except for ongoing fatigue, some minor balance issues, and a dull patch of skin on my right outer thigh. I am fully aware of how lucky I am, but I still struggle to get through what used to be a normal day sometimes. The only real issue I still have is what I call “my dumb days” which my Neurologist tells me is a migraine, but I find it mightly suspicious that I’ve never had migraines before. On those days I can’t track information, it’s really difficult to concentrate, and nothing much actually makes it into my short term memory. Frustrating!
Fatigue is a very common and insidious symptom, since it’s not usually physically apparent. I’m not in a wheelchair or using a cane, so it can be challenging to help other people understand that I’m not always able to perform at 100% all the time. Or sometimes even 80%. It’s frustrating because I’m somewhat of a perfectionist and I’m very task-oriented, so doing a good job is very important to me. I realized pretty early that I needed a new way to look at my life, my tasks, and how I go about doing what I do on a daily basis. It’s led me to some choices and compromises, but I feel pretty good about where I am now! I’d love to help you get to a similar place!
So what have you done to cope? Is there something that’s worked really well for you? Do you have a favorite piece of music, or an affirmation that you go back to, or anything else that just makes it easier to get through the day or night?
Please share! Click on the “comments” link below to get started.