A name given to me in my old Margarita drinking days
My new web site is currently under a bit of construction - but please feel free to roam around. I still need to correct a few grammar errors too - but hey, that's why it's still a work-in-progress....
And a big Thanks for dropping by.....
Welcome to my web page!!!!! I hope I can help others feel a bit less uneasy about receiving a diagnosis of Multiple Sclerosis or Fibromyalgia. You can also add early-osteo-arthritis, as I was only born in 1964, and a deceptively cutely named syndrome called a 'Snapping Scapula' to my list as well (love the name, hate the snap).
After a life filled with odd health problems, including awful cluster warts around my fingernails as a child, psoriasis as a teenager, unexplained swelling in body parts.....I was diagnosed with MS in 1990 at the age of 26. MS slowly destroys the Central Nervous System (brain and spinal cord). In fact, think of an electrical cord that you plug into the wall. It has a nice insulated rubber coating all along it and if any part of it starts to expose wires - you get a very bad connection (and possibly a fire too). In MS, the covering around the nerves that protect the message signals being sent along them, called Myelin, is destroyed. But wait, the body tries to repair the damage - but doesn't do a very good job and you start to see scars (or Sclerosis) in the Central Nervous System. As time goes on, the messages are going haywire and sometimes they aren't going anywhere at all.
Apparently, recent studies indicate that there may be complete death of some of the Nerves as well.
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, Terri Garr and the late Barbara Jordan, to name just a few.
Here is a GREAT link with lots of names of famous people with MS and links to their web sites:
For those of you doing searches for personal MS stories - I've tried to answer most of the questions I've received e-mails about in the following history of my medical life.
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.
1985 or 1986 I had the weirdest thing happen to my right ankle. It became very painful, purple, swollen, you name it it was not normal. I went to three different doctors and got three different diagnosis. I was only about 21 years old. That was a big sign that something was wrong.
1987 1988 - I first started having bladder problems. Talk about a Kidney Infection from Hell. Again, thought it was just something that ran in the family and wrote it off.
3/89 - I had some dimness in my right eye which went away after a week or two (I thought it was from working on a computer too much and the stress of a new job).
9/89 I was working at a law firm (in charge of the Bookkeeping Department), and I was working late one night and darn it I could not feel the keys on my keyboard. We had a nurse in our office who looked over cases and I went in and told her I could hardly feel anything with my hands (mainly my right hand). We decided it must 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 SO SCARED!!!!! I tried to continue on with life as usual because the eye doctor told me I would probably get most if not all of my sight back. He said that my optic nerve was just inflamed. I thought of it as "Arthritis of the Eye." It reminded me of the unexplained swollen ankle a few years earlier.
He never mentioned MS but did want me to get into an old Optic Neuritis study at the University of TX. This Study found that people with Optic Neuritis faired better using Solu-Medrol rather than 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 (actually 2 packs) - the one thing they found in the study that was actually worse than taking nothing at all.
Spring of 1990 While working late one night, the nurse in the office (who is now a dear friend of mine years after I left the firm) kindly requested that I go see a neurologist. I asked her why but she was hesitant to tell me. After giving her the third degree and thinking "Brain Tumors" she told me she had a strong feeling I had Multiple Sclerosis.
No, Not ME!!!! I am invincible and nothing can bring me down. Yet a diagnosis of MS would eventually explain some of the weird things happening in my body especially at such a young age.
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. I went during a time that I was not experiencing any problems. Oh, and remember, we didnt have access to the Internet and other quick resources we have now.
Summer of 1990 test results:
Normal Brain MRI (no Spinal one done)
Normal SEEP's (they did not do VEP's I guess because they could see the optic pallor or damage to my right eye as they always notate it in my records)
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 gadolinium 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 for any messages being sent down my Spine.
PPMS may be a distinct form of MS. My doctor explained it is a Degenerative rather than an Inflammatory form of the disease. What I have researched on my own, a diagnosis of PPMS seems to correlate with my medical records and history.
Oh, and I even have my very own 'Brain Vein' that is large enough to show up on my MRI's. If that thing blows... I goes...
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 anymore and I am now a proud owner of an electric Wheelchair and Van so I can go pretty much any place without having to depend on others for the time being.
However, I can still get around in my house just fine (usually), though I do have my share of falling. I only gained back about 75% of my eyesight from that bout of blinding" optic neuritis back in 1990 too - lots of scotomas (blind spots). Those are my 'major' symptoms - I have plenty of smaller ones, like hyper-reflexes, numbness in places, neurogenic bladder, spasticity which often feels like someone is trying to pull my legs off of me, and on and on.
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'. 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).
Lets forward to this year, 2004. I spent two weeks in-patient and one week out-patient at The Institute of Rehabilitation and Research (TIRR). I have had very mixed results so far. I might have overdone it. The Botox they shot my left shoulder and right leg full of, was also a mixed bag of results. The botox seemed to work well for my right leg - which has had a 24/7 awful cramp in it since 1991. The Botox is wearing off and my cramp is revisiting. My shoulder was mixed results. My question is.? Was this Botoxing worth the $3,000 they charged the insurance company? At this time, I cannot justify it as someone has to pay for such a short-term treatment option (i.e. you and me are paying for it).
I am also faithful about keeping up with some type of exercise, be it in the pool, physical therapy or the gym. I DO NOT get overheated but I try and stretch and strengthen my arms and legs. I take my vitamins and calcium pills every day and I try not to do anything in excess. Even as of this update in 2004, I still try and exercise as much as my poor body can handle. The pool is my FAVORITE place - as I am so free to be me and move around.
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. I have seen MS in its mildest forms and I've seen it at its most brutal form. But all along the way, there are people who have joined this club (not by their choosing obviously) 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.
I know that when MS was first mentioned to me, I wanted to know all I could about it but in secret. I only knew one person with it at that time and my husband and I had spent New Years Eve, 1989 with him (you know, the day before my blinding optic neuritis). Anyhow, to this day I tell him that I caught MS from him (dont know exactly how though). I was very lucky because at least I knew someone that I could call and ask questions.
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 a picture of my reality: Here is a picture of me in my favorite place!!!!!
I also have pictures of some get-togethers (a luncheon and attending a Camp for people with MS)...
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. When I am in my wheelchair at my local Wal-Mart, kids are very intrigued by me - so what do I do, I give them a gentle smile and immediately I can see an ease in the child.
So I hope you take the best advice I can give and SMILE!