Mental Note

This will be a short one. Just wanted to let you all know there has been another delay in the beginning of the clinical trial. (I know.) Apparently there is some hold up in the legal department and not with the staff of my doctor's office. They are anxious to start as I am, but I guess the legal department is moving slowly to go over everything with a fine tooth comb. I am trying to be patient, but my patience is definitely being tried. So, the new date for the meeting is February 4th. hopefully, this will be the last delay. My numbness, weakness and double vision are not subsiding, so I am anxious to try something soon. Please keep me in your thoughts and prayers for no more delays. Thanks again for all your support. It truly does mean the world to me!! Love, Tammy

Double Trouble

Just around New Years Eve I started experiencing my double vision again. This will be the third occurrence in a year. It seems to return approximately every 6 months, give or take a month. My first episode was last January in my left eye. It was after I had been up reading late one night. No matter what I did, the double vision wouldn't stop. I decided to mention it to Dave and see how it was in the morning. The next morning it was gone, but I did tell Dave and he was like "Great. What else is wrong with you?" This was really at the very beginning of me having admitted there might be something wrong at all. But it was before the ER and well before any neurologists entered the picture. I continued to have blurry or cloudy vision for the next few months, almost daily, but the double vision didn't happen again. I figured it was a fluke. <>

In July, right before my spinal tap, it happened again. Only this time it lasted longer. It would continue for the next week and last several hours at a time. It seemed to be most bothersome when I was watching TV or reading. This time it shifted between both eyes, but seemed most prominent in the left. It stopped after about a week. I mentioned it to the doctor again as an FYI.<>

So now I am in my third episode of this. Again only in my left eye, like the first occurrence. It's been over a week and it hasn't let up at all. It happens several times a day and the blurry cloudy vision is there when the double vision takes a breathier. <>

I have been feeling worse lately. More exhausted. Definitely more limbs going numb, which is still weird & scary. The weakness still feels bad and has been accompanied by more pain. I think the pain is a combination of my Fibromyalgia and whatever else is going on in my body. It is hard to drive sometimes trying to compensate for the weakness and the pain. I usually come home or don't go very far. <>

The meeting for the trial is in 5 days. I can't wait for them to set up the screenings! At least then I will feel like I am accomplishing something or making an effort to get better. I ordered some books with my birthday money. "MS for Dummies" a good reference book, a book about exercises for people with MS and a book by Montel Williams called "Climbing Higher" about his experience with finding out he had MS and living with it. The exercise book I was happy to find because everything I have read ,and from what my neurologist has told me, was not to exercise. It is believed that by heating up your body you can exacerbate your symptoms and bring out new ones. This book does caution you to be careful because "exercise can be detrimental to your health." But they give options to try during good days and bad days. Once my good days kick in I hope to try and put some of these exercises into practice. <>

I found the Montel book an easy read like the book "Women Living with MS" that I wrote about last time. It is good for me to read about others experiences and how they dealt with it; how it has made them stronger. Also, many people seem to be ready to pass on advice on how they would do things differently. So knowledge is power! <>

I will write again after I hear about the trial next week. Let's hope double trouble becomes mind over matter...

Meeting of the Minds

Happy New Year!! May 2009 find all of us healthy, wealthy and wise! (Ain't that the truth.) I have been having a really rough past few days. Typically my right side becomes numb, but the last few days both arms and legs have been going numb. It is so weird and scary! I can barely get off the couch. I wanted to brush my teeth and shower yesterday. I felt that if I couldn't be productive, the least I could do was be clean! When I was attempting to come back down the stairs, I told Dave that normally when my legs feel weak, I go slowly and use my hands to brace myself. However, since they were numb too, I felt like I had no safety net...I felt like a floating torso! Anyways, so tired! I was a little foggy with my mom shopping last week. I kept misplacing things (only in my mind) but they were right next to me or actually in my hand. It is all still unnerving, but I am trying to come to grips with this CIS/MS...slowly, but surely. <>

My mom lent me a book she bought called "Women Living with Multiple Sclerosis" by Judith Lynn Nichols. It was really a great start for me to look at as I try and get some information. This book was actually created out of an online chat group of about 20 friends with MS. They all met in an info section of an MS website. They became friends and went off to form their own friendly support group. The author then compiled their emails to each other into different subjects and created this book. It is really a great tool because you get so many different prospectives and since no one's experience with MS is the same you are sure to find someone similar to yourself.<>

I highly recommend this book to anyone who is looking for answers or understanding about what they are going thru or what to possibly expect. I would like to quote a few sections I liked in this blog to share with all of you. First off I found it very interesting that several people are diagnosed with "possible/probable MS". That's me! Unfortunately, several of these woman have that label for 10-20 years. In my favor is part of the reason, for some of them, is there was no MRI before, but others are CIS like me.<>

My first indication that I would find comfort in this book was reading about a 28 year old woman who had finally been told she wasn't crazy and her neurological exam was abnormal. She and her husband were happy. This followed: "Is this possible? A young wife and mother suspects she has a catastrophic medical problem and she rejoices when a doctor tells her she's probably right? If (she) is experiencing the first signs and symptoms of (MS), it's not only possible, it's very likely. ...many of us have concluded that anything is better than those first days or months or years with (MS), when there are no answers to explain the strange happenings within our bodies."<>

They even helped with validation on the disorientation and the forgetfulness, they call them "flutters": "Set timers to remind ourselves that we have food in the oven, ... children to be picked up from school, ... or anything else that requires our attention at a particular moment. Then we have to write notes to remind ourselves why we set the timers." I can totally relate to that, I forget things almost instantly, especially when I'm really tired or pushing too hard.<>

Another chapter called "Tired of Being Tired" (love the title!) refers to just what you would think it would in this single MS symptom. (They refer to MS in this book as the MonSter.) One woman is venting about her frustrations over the littlest thing tiring her out, like getting dressed and needing a nap after. I like how she ends her post: "I will not let this MonSter conquer me (even if I am too tired to remember where I am or why I am there)." I am right there with her. I am not giving up, but still affected.<>

Lastly, one girl ended one of her posts with some advice for people newly diagnosed. "MS does not affect all people in the same way. Nor are the side effects of different medications or treatments the same for all of us." Another said, " I think the biggest help is to realize we are not alone in this, and to allow others to minister to us in all ways, just as we continue to give to others." I think that was the biggest thing I got out of this book. I am not alone. These women gave me definitions to what I was feeling, answers to my questions and validation to the symptoms I was expereincing. That was definitely a great read for me, and a wonderful meeting of the (MS) minds...