I feel like singing from the trees or at least through the library stacks :) Just met with a second neurologist--she was great! My family doctor had recommended the Waddell Center which is part of UC. In order to get an appointment with them I had to fax all my records and then they had to be reviewed And Then I was able to make an appointment. Since today was the soonest appointment I also made the appointment with the first guy since he had sooner openings. But after that horrid visit I really wanted to wait to start treatment until I met with this doctor. I'm so glad I did!
She was wonderful. I kept all my clothes on--except for my shoes and socks. We looked through my MRIs and she explained what we were seeing. She really wasn't overly concerned by what she saw, said my brain showed very few lesions. There was a larger one on my right side but said it looked consistent with MS. I guess if I had any problems with balance that lesions might be at fault, but I'm not really. There were lots of lesions on my spinal cord in the thoracic area. Mostly the spinal cord looked like wisps of smoke were running through it. She explained though that the amount of lesions does not correlate with the severity of the disease. Obviously less is better but she's seen people with a heavy lesions load and no symptoms while others have few lesions but lots of problems. Crazy disease!
She recommended we start on the disease modifying drugs soon. And when I asked her about breastfeeding and drugs she said it would be fine to wait until I'm finished breastfeeding as long as I start the drugs in a few months. So I'll talk to Xander's docs on Monday but I think if we wean him around a year--what I was planning anyway--then I'll start on betaseron after that. Yeah! No emergency, fast weaning. No need to to worry about bottles and formula etc :) Breastfeeding is just so easy and so much a part of what we do. Part of me was sad at the thought of stopping it and part of me didn't want to add new routines and hassles to our lives--when we're going to be adding new stuff anyway.
She recommended Betaseron as perhaps the best drug for me. It is injected subcutaneously every other day. My dad is on it and he has had good luck with it. The main side-effect is "flu like symptoms" which is now only in 60% of people or something like that--with my luck I'm just counting on that. But she said there are things that can be done to alleviate this and it only lasts for 4-6 hours after the shot. And it is supposed to get better after 2-4 months on the shot.
In one month I have an appointment with the nurse practitioner to explain in more detail about the drug and ms. (So much nicer than the big binders I was handed by the first doctor!) Then we'll fill out all the paperwork and I guess a nurse from the drug company comes to your house to teach you how to inject yourself. Since I was looking to breastfeed about 2 more months she said that by the time we went through all the paperwork and insurance stuff it would probably be that long.
The first doctor left me with this big feeling of urgency and advancing disease. Dr. Melanson made me feel much more calm. I feel as if I have this thing but it's going to be more of an annoyance than anything. She recommended staying healthy--avoiding people who are sick. Any kind of an infection, sore throat, cold, uti all can cause my immune system to go into action and ms symptoms can result. She even had a word for this type of reaction which wasn't considered a full relapse usually. I kind of wonder if this is what happened at Christmas because I had some 24 hour virus before everything started.
As far as diet she recommends a healthy diet, a multi-vitamin, and getting enough omega-6 & 3s. Since both boys love fish we're currently working on this one. This week we're going to try a curried cod with spicy yogurt sauce--I picked up a Rachel Ray cookbook at the library :) Dr. Melanson was happy to hear about my yoga class and I'm going to really try to fit in another class or two because exercise is also important.
I know it's a chronic condition and all but I just feel so much lighter and happier. Happy happy day :)
Thursday, February 14, 2008
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1 comment:
Kelly,
Happy V. Day, lady! I'm so happy to read your post for today and that you have found out not only that your ms isn't as awful as the other dr. made it out to be and that you have a dr. that is awesome. Since she's going to be your main source of information, it is so important that you like her and have the same game plan in mind.
It is fantastic that you don't have to quit breastfeeding any earlier than you had intended, too!
I have been thinking about you every single day and hoping things are alright. I don't know what time you get home from work at night, but I'm always up until 11 if you ever want/need to call.
I miss you and hope we can get together very soon. Many hugs!!
Love,
Kathy
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