187153216 - ProfilesArchive

About Me

In February 2007 I was diagnosed with Myasthenia Gravis, a neuromuscular disease. While there is a lot of information on the web about this condition, it can be very confusing and even contradictory. I was frustrated at my inability to simply find stories from other people, telling me how the process worked in their situation. Knowing what it is like, what to expect along the way, and hearing how others have enjoyed complete or long-term remission all help to put newly diagnosed patients at ease in what can be an otherwise scary scenario.
Thus, I decided to start a MySpace page dedicated simply to telling my own story, as well as inviting others to share their's. If you want clinical information and so forth, I will try to provide links, but that is available elsewhere, This is merely a spot to share stories and offer hope and encouragement to others.
Keep in mind that I do not claim all this information is medically 100% accurate - it is simply how I understand things based on conversations with doctors, my own research, etc. Again, the goal here is to help others going through this to see how my path went, and take encouragement from it.
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To read my story from the beginning, click on "VIEW ALL BLOG ENTRIES" and then on the left under "BLOG ARCHIVE" click "OLDER" until you reach January 29th, 2007, the first entry. Begin reading from the BOTTOM UP, then moving to NEWER BLOG ARCHIVE to advance a page. I began adding this all in early May, 2007 and back dating the entries prior to that point, and tried to remember the details up to that point as best as I could!
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My Interests

I'd like to meet:

* Others diagnosed with Myasthenia Gravis, either recently or at any point in their lives.
* People who are willing to share their own experiences, good or bad, to offer a glimpse into the numerous ways this disease affects each sufferer.
* Those who have stories of encouragement, whether MG-related or not.
* Those who simply wish to learn more about the disease or offer their own encouraging words.

My Blog

Chemo Treatment for MG?

I wanted to share an email I received last week about a fellow MG-sufferer who has had success with an experimental treatment program using chemotherapy. If nothing else is working for you, or you jus...
Posted by on Thu, 09 Jul 2009 05:22:00 GMT

Prednisone - great stuff but bad stuff

Well, long overdue for an update. As you may remember, I started another relapse in early February, and we tried upping Cellcept to 3000 mg/day and dropping Prednisone to 20 mg every other day. I've b...
Posted by on Mon, 15 Jun 2009 07:33:00 GMT

Post-wedding comments

Well, the wedding and honeymoon are over, and I've been back in the daily grind at work for over two weeks now.For the wedding, I did have double vision, but I was still able to see my bride, and I wa...
Posted by on Tue, 24 Mar 2009 05:22:00 GMT

Advice for Ellisa?

If you will look at my previous blog comments, there is a question from Ellisa regarding myasthenic crisis. Having never gone through a crisis, I can't offer her any advice on my end, but I'm sure som...
Posted by on Tue, 24 Mar 2009 05:20:00 GMT

Relapse Again

Hi Everyone! Again, sorry for the delay between blogs. I just feel bad not having anything too "new" to share on the MG front, but I should at least check in via blog a little more regularly.Well, the...
Posted by on Mon, 23 Feb 2009 05:50:00 GMT

Any Doctors/Neurologists Out There?

Out of curiosity, are there any doctors who check this website? I understand no one is going to want to diagnose or treat anyone online, but if there is anyone willing to field occasional general ques...
Posted by on Mon, 03 Nov 2008 16:39:00 GMT

Upping the Meds

Well, finally went back to both my primary neurologist and the specialist at UT Southwestern last week. The double vision and ptosis that returned in August didn't improve any. Still no real problems ...
Posted by on Wed, 08 Oct 2008 14:50:00 GMT

Quick Update

Just a quick update - the double vision has not relented over the past week, so my neurologist is bumping my prednisone back up (to 20 mg/every other day) and putting me back on mestinon. Will let eve...
Posted by on Tue, 19 Aug 2008 05:47:00 GMT

What does a relapse look like?

I'm asking the question "what does relapse look like in MG" to see if there are some of you out there who have gone into remission or near remission, and had it return? I do have one friend--the first...
Posted by on Wed, 13 Aug 2008 12:38:00 GMT

Summer Heat

All you other MGers are well aware of the toll heat takes on us. So why on earth do I live in Texas?! Last summer was terrible for me as it was in the midst of the worst of my MG. I'd be outside and m...
Posted by on Thu, 17 Jul 2008 05:10:00 GMT