MS Adventures – Modafinil, Day One

Today I went to my Doctor and talked to her about going on Modafinil. For those of you who’ve never heard of it, Modafinil is an alertness drug that was originally marketed as a treatment for narcolepsy and other sleep disorders. It’s also marketed as Provigil in the US and Alertec in Canada. Ages ago, my Neurologist suggested I try it, since my major MS complaints are fatigue (Hah! Total exhaustion more like! I wish there were more descriptive words for it!) and cognitive dysfunction, more colloquially known as “brain fog.”

CLICK HERE TO LEARN MORE ABOUT BRAIN FOG

At the time, I said no, because 1. I dislike taking pills and 2. I was in the middle of learning about behavioral- and diet-modification to try to control my symptoms. Now, I feel like I’ve taken those as far as I can, with some success (I’ll write about my diet discoveries soon) and I was ready for the next step. Pharmacology. In other words, pills. I’ve got a few articles below if you’re curious about it, or just do an internet search – there’s quite a bit of information about Modafinil, since it’s been out since 1994 or so, and used to treat several different ailments.

CLICK HERE FOR THE WIKIPEDIA ENTRY

CLICK HERE FOR INFORMATION ON MODAFINIL AND MS

CLICK HERE FOR SOME HISTORY ON MODAFINIL

So! I’ve taken my first pill. Once dose, once a day, in the morning. It’ll be up to me to discover if I need to take it with food or not. I just took it, so I’m not sure exactly how my system is going to react to it, but I’ll let you know tomorrow. I’m both scared that it won’t do anything and excited that it might!

PS I just noticed I used the word “colloquially” in the first paragraph. I feel smarter already!

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Coping with Multiple Sclerosis

I’ve been looking around for posts or articles or videos that are more positive about MS, and they can be a little tricky to find! There are hundreds of posts out there about how horrible it is, but I want to find different ways of looking at it and dealing or coping with it. Here’s a great article listing five ways to cope with MS. Let me know what you think by commenting below!

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5 Ways to Cope With Multiple Sclerosis

I will never forget June 5, 2008. That is the day I heard the words “You have Multiple Sclerosis” from my doctor. When I got the diagnosis I didn’t cry. I think I didn’t cry because I wasn’t really sure what Multiple Sclerosis was. Unfortunately it didn’t take me long to learn. Shortly after my diagnosis, I had a relapse which prevented me from walking, dressing myself, feeding myself, and from doing a lot of other daily routines. Fortunately, my relapse ended, but unfortunately, I had a few more. The following is 5 ways I found to cope with Multiple Sclerosis

1. Get a copy of the ‘Voices of MS’ Documentary DVD. I had been diagnosed a little over a year before picking up a copy of this DVD. It was recommended to me by an acquaintance who has MS. This documentary features others who have Multiple sclerosis (including David Lander who played “Squiggy” from the television show Laverne and Shirley). The people in the documentary talk about what brought them to their diagnosis and how they live day by day with it. This is not only a great DVD to watch to help you cope, it is also great for your friends and family to watch as well.

2. Understand this diagnosis is also hard for your loved ones. If you have just been diagnosed or have had MS for a while, I am sure you have a lot of unanswered questions. Sometimes, especially when having a relapse, it is easy to feel all alone and feel that no one understands what you are going through. While those close to you may try to understand, they may have a hard time because they do not fully understand what the disease is or are in denial about it. It is very important that you sit down with them and answer any questions they may have and explain how it affects you.

3. Make sure your Medication is right for you. When you are diagnosed, the doctor will usually prescribe medication that he or she feels will help you the best. Unfortunately, the medication initially prescribed may not be the right one for you. Always make sure you are fully aware of any side effects it may have. Always let your Neurologist know if you are experiencing any of these side effects so he or she can put you on something else. The only way to really know what medication is best for your situation is by trial and error.

4.Join an online or offline support group. I feel this is one of the best ways to cope with MS. Why? While friends and family may try to understand the situation and help you, they may not fully understand what you are going through. Do a Google search to see if there are support groups close by. If not (or if you do not wish to go to meetings) do a search for online groups. Not only will it help to connect with people who have MS, you can also get updates on new medications and guidance from others who have gotten disability.

5.Watch for the warning signs of depression. At some point, a large percentage of people with MS get depression. This is either caused by the disease itself, the stress of dealing with the disease, or from the medication. If you have sadness that lasts for a long period of time, it is imperative that you talk to your doctor as they can look into treatments that will help you. If you are suffering even with treatment and feel like you don’t have anyone to talk to, please visit call 1-800-SUICIDE. You can also visit http://suicidehotlines.com for specific state and international suicide hotline numbers.

The above are just 5 of the many ways to cope with MS. In addition to the 5 tips above, the best way to cope with Multiple Sclerosis is to remember that it is not a death sentence and it is possible to live a normal happy life.

Article Source: http://EzineArticles.com/?expert=Madison_Gregory

Managing Multiple Sclerosis – A Vimeo Video Series

I found these amazing videos on Vimeo, which means they’re publicly available and totally legal for me to post here on my blog (for as long as they’re up, anyway lol!)

Please watch, enjoy, and comment!

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5. Learning To Manage MS from Michael Yonchenko on Vimeo.

This is part 5 in the series, “Introduction to Multiple Sclerosis”.

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Great Reaction to MS Diagnosis – “Oh Thank God!”

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.

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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!

Diet and MS – a Different Perspective

Just so you’re all aware, this video is a complete lecture so it’s just over an hour long. It’s very interesting and the speaker is quite engaging, though! He has some very different ideas, and I don’t agree with all of them, but it is entertaining to listen to him.
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Diet and Multiple Sclerosis from John McDougall on Vimeo.

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Dr. John McDougall talks about the importance of diet and the effects it has on Multiple Sclerosis.

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I’m honestly not sure what I think of his ideas, but he’s obviously done a lot more research than I have. In my video about my MS treatment I mention that eliminating complex carbs from my diet has seemed to increase my energy levels, yet here’s a doctor encouraging people to eat a starch based diet.

So what do you think? Do you have any opinions or experiments you’ve done with you own diet that has seemed to have some kind of effect on your disease, whether good or bad? Please share your experiences by commenting below!
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If you are at all interested, here is a link to “The Multiple Sclerosis Diet Book” by Dr. Swank, the doctor that Dr. McDougall (the lecturer) called “his personal hero” and features as a video in his presentation.

My MS Disclosure

My MS Disclosure from Tanya Asbreuk on Vimeo.

http://unhasty.com

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In this video I talk about discussing your condition with other people, and where you might need to be mentally before you’ll feel comfortable doing it.

How To Change Your MS Story

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Have you ever noticed how the “stories” you tell yourself can impact your attitude, your energy levels, and ultimately your health and recovery? I’ve thought about this a lot, so I decided to talk about it!

What’s your favorite “story” that you keep going back to? The one that comes up every time you start feeling down or under the weather? Once you notice it, try to rewrite it to make it more positive. Just change the wording – instead of “I’m too tired to do this” change it to “I am really looking forward to going to sleep as soon as I finish this task.” Rewrite your story with yourself as the Hero! Why not!?!

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Haha! Yes, I had notes, and I’m looking down at them probably more than I should. I use notes a lot since I sometimes have a hard time keeping my train of thought going in one direction, so when I have something specific to talk about, I write parts of it down first. Hopefully I’ll get better at this as time goes on!

Do I Have MS? A Reply to A.A.’s Questions

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.

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Hi Axxxxx,

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

Headaches, Optic Neuritis, and Muscle Spasms


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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.

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MS and Cognitive Impairment

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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.