I haven't written in awhile, been kind of busy with work and the holiday season. The doctors finally figured out what the cause of my side pain was. After I had every GI test known to man and they all came up negative, I spoke with my neurologist and he decided I should have a thoracic spine MRI. The results to that were not good. I have 2 lesions directly opposite of my belly button. My neurologist finally came to the conclusion the side pain is from those lesions. The pain hasn't gotten any better. It has actually gotten worse both of my sides hurt and I am in pain 24 hours a day 7 days a week. I pretty much block it out as much as I can. If I am busy at work or doing something fun this is the easiest times to ignore it. I have pretty much come to the conclusion that there is nothing I can do about it and this is what I have to live with.
I had my 7th Tysabri infusion 2 weeks ago, everything is going OK with it except every time I read the news there is another case of PML popping up. This does not make me feel any better about taking this drug. Overall it is working pretty well, I am less tired on the drug and the short term side effects of the drug are much better than Avonex. I have no desire to go back to Avonex. I have definitely had some setbacks though. Right now part of my right foot is numb and has been this way since right after my 6th Tysabri infusion. About 3 weeks ago the skin on my chest went numb. Luckily that only lasted a week. The doctors keep saying that now I am in the stage of the medicine that I should start seeing real results. I am trying to be optimistic but I am also a realist and I am not going to get my hopes up. I made an appointment with my neurologist at the end of January so we can discuss the fact that more PML cases keep showing up. I really don't plan on him saying anything different than last time but I figure if I make it known this is a bigger concern that maybe I will get better answers.
Christmas is just around the corner and I am really looking forward to it. Hopefully the year 2009 will bring some good news with the state of my MS. I am trying to stay optimistic.
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6 comments:
Hi Jen, keep the faith, I check your blog. I was diagnosed March, 2008 with MS and I am on BetaSeron. I just started taking Cymbalta for foot and leg numbness and it seems to be working. Keep praying.
Jen have you read the MS Diet Book?
It's the toughest diet I've seen but it makes some sense and has helped others.
MS recovery diet.... http://www.msrecoverydiet.com
Hi "Wondering,"
The thing I wonder about with this diet is I had every GI test in the book and nothing showed up. So how could something be wrong with my digestive system?
Jen, the MS diet doesn't address one's digestive system. The theory is that a person may be allergic to certain foods and these may cause flare ups of the MS symptoms.
For example, one could be allergic to wheat products, but we keep eating bread etc., and this reaction in our body may cause flare ups. This diet tells what food groups have been thought to possibly cause this.
You eliminate these food groups from your diet for a period of time (normally weeks or months) and then introduce them back into your diet. You keep track of what you eat and add back into your diet. If you start feeling reactionary symptoms to a certain food group, you eliminate that group.
The book also talks about how our body can "forget" that it is allergic to a food group, by eliminating that food group from our diet for a period of time and then gradually bringing it back, one may be able to eat that food again as the body doesn't remember it was allergic to it.
The book is written by two women who had MS symptoms so bad that it impaired their walking etc. Now both are walking and hiking etc.
I went on the diet and it was one of the hardest things I've ever done as I took all the food groups at once and eliminated them. Wow, try shopping for food that doesn't have sugar or wheat in it. You have to go to health food stores and the food costs more, but I was also able to find many of the foods at Wal Mart.
I wasn't intending on loosing weight with the diet but I lost 20 lbs in 2 months and it has changed how I eat. I eat more healthy now as my body seems to feel better when I don't eat certain foods. I still eat most everything just at smaller portions (like beef).
I think it's worth your time to at least read the book. It's in paperback for around $10. Who knows, you may have one food group that is aggrevating your body and as such adds to setting off symptoms. The diet isn't easy, especially because it eliminates sugar. There are some substitutes
and there are recipes in the book but it still is hard. I drank alot
of 100% pure white grape juice as that is really sweet and I ate tons of almonds to hold off my hunger binges. You can eat fish, seafood, chicken etc. There's a great shrimp etoffee recipe in it.
Anyway, I hope you at least read the book. I believe in the theory behind it. It just makes some sense as you are reading it.
I appreciate the information I will definitely take a look at the book. Thank you.
Hi Jen, Haven't seen a post yet for 2009. How's the new year going for you? Tried the MS Diet yet?
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