Has our faith in Western medicine completely faded? Although one would hope that treatments for Multiple Sclerosis are ever-improving, lately I have heard time and again that individuals with the disease have abandoned Western medicine altogether in favor of diet, exercise, and marijuana. One recent supplement fad for MS is Evening Primrose oil. I have personally chosen Gilenya for the time being, but I see no point in excluding natural and healthy treatments that apparently work so well for others. Cannabis use with MS has already been covered recently. While I intend to cover the evolving family of alternative therapies in future posts, right now we will focus how to treat Multiple Sclerosis with diet.
Every summer I am amazed at the heat. Ridiculous – right? I have a virtual 2 degree window of comfort (I’m so annoying). Cold temperatures are made bearable with cardigans and blankets. Warm weather, on the other hand, seems to melt my brain. Heat and Multiple Sclerosis work together like two villains in a comic book.
Individuals with Multiple Sclerosis are notorious for heat intolerance resulting in an endless variety of possible repercussions – this is known as Uhthoff’s phenomenon (or Syndrome). Summers may be beautiful, but they are also difficult for us.
Work can be stressful and tough without a disease like MS. What’s a person to do when confronting a challenging career and a challenging disease? Plenty of people (and celebrities) have flourished in their careers in spite of MS. What can you do to be one of those people? What are your options if you simply can’t work anymore? What do you need to know about Multiple Sclerosis and disability?
Last week I began a new position at the company where I’ve worked for over a decade. The coming months are certain to be incredibly stressful. The primary challenges I face on a daily basis in a technical office career are cognitive issues, speech issues, walking (even though it’s primarily short distances), and fatigue. I abstain from many medications because they cause too much lethargy for me to power through a work day while taking them. While these are not all of the challenges I face with Multiple Sclerosis, they are the symptoms that affect me most in my job.
Many times when I meet someone, they are surprised that I do still work. I often think about how I could spend the time I’m stressed and tired at work instead resting, doing yoga, swimming, anything to help myself physically and mentally. Then again, who doesn’t dream about being somewhere else when they’re busy on the job? Certainly doctors and hospitals seem to expect everyone to have open schedules ready to spend hours and days in their offices.
Happy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.
I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.
MRI: Magnetic Resonance Imaging AKA the procedure wherein many non-claustrophobic people find out what claustrophobia kinda feels like. MRI is an important tool in diagnosing Multiple Sclerosis and in monitoring disease progression. Last week I underwent the least stressful MRI that I have ever experienced (thanks Ativan!). What is MRI for Multiple Sclerosis?
Depending on your disease activity and medication you are probably being scanned anywhere from every 6 months to every 2 years. How does the MRI work and what does it teach us? Today we are discussing traditional MRI for Multiple Sclerosis.
I’m not a picky person. Really, I’m not. Normally I will tolerate any kind of abuse from a doctor as long as they give me accurate information about my health and write the necessary prescriptions. However, I’m now on my third neurologist. What happened?
Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are just not right for my body. Now that I have begun the drug I have started to focus on Gilenya side effects.
With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!
Lately I have had serious trouble with something frequently called the MS Hug (also known as Girdle Pain or sometimes Girdle Band Sensation). What is the MS Hug? There are a couple of theories on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (OK it’s not this bad every single time). The more popular theory is that the spasms are caused by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor for me. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work with computers and have no medical background.