"Welcome to my little homepage"

I've had a pretty rough and interesting life. I am a true computer nerdette at heart. I've been a neurotic workaholic since I was in my teens (my MS and my medications have slowed me way down these days). I earned my Associates Degree in Accounting while attending school at night and worked in the Accounting and Computer fields until 1995 when I was forced to go on disability due to Multiple Sclerosis. I have also been diagnosed with Fibromyalgia (secondary to MS) and Snapping Scapula Syndrome (I just love the name - but hate the "Snap" it puts in my life). Oh Life's Joys.

I was diagnosed with MS in 1990 at the age of 26. MS slowly destroys the Central Nervous System (brain and spinal cord). MS is not Muscular Dystrophy which is a disease that atrophies the muscles (usually in children). I encourage you to visit the National Multiple Sclerosis Society's homepage. There are many famous people who have it, including Annette Funicello, Richard Pryor, Squiggy from Laverne & Shirley, Montel Williams, Clay Walker, Houston's own ABC anchor, Melanie Lawson, Houston's former gossip columnist Maxine Messinger and the late Barbara Jordan. This guy has a great list of famous people with MS you can browse through alphebetically (yes, there are more than you think). Laetoli Man's Famous People with MS Page. Please click on the following to visit the National Multiple Sclerosis Society homepage. I've also created a webpage full of pictures from the MS Society's Camp Can Do in Texas. There are 7 or 8 pages of pictures. Just click on the following link to take a peek at Camp Can Do. These are links to pictures you can browse full of pictures of people with MS and MS related events, like Camp Can Do. A Luncheon Get Together Camp Can Do - Year 2000 Camp Can Do - Year 2000 Continued For those of you doing searches for personal MS stories - mine is at the bottom of this page. I've tried to answer most of the questions I've received e-mails about.

Now for the story of my life with MS and other fun stuff... Violins Please.... I am at a point with this disease that it is obvious to see that something is wrong with me. For those of you doing searches for personal stories about MS or Fibromyalgia - well, here is mine. I first started having bladder problems around 1987/88. Then, around 3/89 I had some dimness in my right eye which went away (I thought it was from working on a computer too much). The Fall of 1989 found me asking a nurse friend I worked with why I couldn't feel the keyboard with my fingers. We both figured it might be Carpel Tunnel Syndrome. Again, it went away. January 1st, 1990 - began going blind in my right eye (that's right - New Year's Day!). Within several days I had lost all sight in that eye. I was SCARED but I continued on with life as usual because the eye doctor told me I would probably get my sight back - that my optic nerve was just inflamed. He never mentioned MS but did want me to get into that old Optic Neuritis study at the University of TX (the one where they found that people faired better using Solu-Medrol versus oral steroids or doing nothing at all). I was too scared to be messing with my eyes so I didn't participate in the study. However, I did take oral steroids - a Medrol pack - the one thing they found in the study that was actually worse than taking nothing at all. Spring of 1990 - my nurse friend kindly requested that I go see a neurologist. I asked her why but she was hesitant to tell me???? After giving her the 3rd degree - she told me she had a strong feeling I had Multiple Sclerosis. It took me several months to research what MS was and after I realized myself that I probably did have MS - I went for testing. Summer of 1990 test results: Normal Brain MRI, Normal SEEP's (didn't do VEP's - I guess because they could see the optic pallor or damage to my right eye), but an abnormal CSF study with the IgG increases and 4 oligloconal bands. Diagnosis: Probable MS. I'm still here - although I have now "Failed" every MS test (i.e. they all are positive for MS). My doctor, who happens to be one of the top MS doctors in the US, says I have Primary Progressive MS. My MRI's don't show many gadilinium enhanced lesions (active lesions), but they always show a few old and ever changing plaques. My MS likes to hang out in my Cervical Spine (neck area) which causes a whole mess of problems. Oh, and I even have my very own "Brain Vein" that is large enough to show up on my MRI's. Yes, I have some "Issues" with my pet brain but it doesn't listen to me. I have obvious head tremors, which get tiring if I don't have a place to rest my head against. I walk funny due to spasticity and some atrophy in my right leg. I can't walk very far - I mean I don't do grocery stores without using a scooter. However, I can get around in my house just fine (usually). Also, I only gained back about 75% of my eyesight from that bout of blinding" optic neuritis back in 1990 - lots of scotomas (blind spots). Those are my "major" symptoms - I have plenty of smaller ones (like hyper-reflexes, numbness in places, etc.) I was also diagnosed with Fibromyalgia back in 1999. I have way too much pain along with muscle knots - especially in and on my back. They think this is also the possible cause of my "Snapping Scapula." Many theories about Fibromyalgia put it as a "Sleep Disorder." Also, the fact I have MS lesions in my spine could affect the proper rest my body needs. I also wonder if the fact I've been an ADD person (yeah, I was a Ritalin kid) all my life has anything to do with it (i.e., messed up brain waves). I am also faithful about keeping up with some type of exercise, be it in the pool, physical therapy or the gym (where I DO NOT get overheated but I try and stretch and strengthen my legs). I take my vitamins and I try not to do anything in excess. Please DO NOT try and sell me on any miracle MS cure - like Bee Stings (BS for short). I've been around long enough to know that there is no magic pill for this disease and BEWARE of anyone trying to sell you a cure in a bottle! I have one thing positive to say about all this. I have met the most WONDERFUL people through my association with MS and the MS Society. I have seen MS in it's mildest forms and I've seen it at it's most brutal form. But all along the way, there are people who have joined this club (not by their choosing) who are truly INCREDIBLE! I put this page out on the Internet for others struggling with MS or Fibromyalgia. I would like to change the face of MS. Now that I've given you more than you EVER wanted to know, please feel free to e-mail me. You can put your violins away now because I'm done with my story. WAIT!!!! I have pictures of my reality: The first one is my usual view of the world and the second one - other peoples' usual view of me....:) Multiple Sclerosis, Fibromyalgia, Lupus and other life-long diseases can be very lonely for many who must deal with fully functioning minds but bodies that just don't work right. I'm truly blessed as I have a great network of family and friends. Don't worry, even after all these years I too still wonder what the future holds I'm a huge believer in Smiles. A smile can break more barriers than you can ever imagine. It's the Ultimate Universal Sign - so I hope you take the best advice I can give and SMILE! Please feel free to e-mail me at MarciaJ@alltel.net Or MarciaJ720@AOL.com