Monday, March 17, 2008

Nurse Meeting

I love this practice! Today I met with the nurse practitioner to get the ball rolling with the drugs and also to have her explain more about MS. It was really great--we talked forever! She felt really good about my prognosis since I had probably had MS for such a long time (my first episode was probably 10 years ago). I guess they can tell alot about how the disease will progress by looking at how you handled the first attacks. I also really liked how skeptical she was about all the drugs. She said they are what we have and have shown to help, but they aren't a cure. And no one knows how MS will affect you--you could do the drugs and have no attacks but maybe you wouldn't have had any even without the drugs. I appreciated her honesty. She also said that sometimes the drugs actually cause more problems then the MS would, but the research still shows that they are probably helpful in the long run.

Pregnancy and nursing offer some protection from MS but usually women have one attack in the first 9 months after having a baby--my Christmas episode fits. She too recommended I nurse as long as I was planning--really only one more month. I went ahead and filled out the drug company info so they will look into my insurance etc. and then hopefully they will ship me some betaseron within 2-3 weeks. Then I can set up an appointment with their nurse (whom Kelly said is excellent--yeah!) She'll come to the house and teach me (and Dennis) how to give the shot. Three months after starting the drugs I'll come to see the neurologist again and probably get an MRI done again. I guess they also do lots of bloodwork to make sure the betaseron isn't causing problems with my liver and a whole host of other body functions.

We also talked about all the other things that might be caused by MS. It's definitely a whole body disease. If I have any problems I'm to call and they'll help me figure out if it's MS related and if there is something that can be done for it. I was really happy to hear that there are lots of things they can recommend. I told her about my occasional numbness in my legs and she suggested I talk to a physical therapist who does some type of "taping" which has helped a lot of people with their numb feet--maybe no more tingly toes ;) I guess they work with PT a lot and are also open to some of the alternative treatments, especially for people with primary progressive MS because there just isn't a lot they can offer them.

I told her how happy I was to be with these doctors. And kind of told about how unhappy I was with my first doctor--I was good and didn't mention any names! But of course she saw my chart and knew exactly who I was talking about. She ran into Rhonda at a conference and was shocked by all the things that Rhonda did, doling our advice, finishing spinal taps etc--especially because she's not even a nurse! I guess Rhonda does lots of talks about MS and Intimacy which are really well received--I can't imagine that at all! Such a small little MS world. At the Waddell center (where I'm going) it is a nonprofit so they don't schedule patients too closely together. I think that was the feeling calm I felt when I met with Dr. Melanson and also with Kelly today. What a difference that makes.

She was also just really upbeat and positive, even excited by the state of MS research and how fast things are changing. She gave me a hug as I said goodbye.

Tuesday, March 4, 2008

MS Walk

Our whole family is going to the MS Walk in Indy on March 15. We've created a team "The Walter Walkers" and even have a website:

Click here to view the team page for The Walter Walkers
If the text above does not appear as a clickable link, you can visit the web address:

I'm not really big on raising money--especially because we'll probably be doing a walk-a-thon for spina bifida this summer but the link is there if anyone is interested.

MS-wise not too much has been happening. My feet and legs go though tingly numb periods which is annoying and kind of this reminder that I have this thing, but it's not horrible. I got to see my dad get a shot. Since my mom was talking while doing it she made him bleed a little, but I guess usually it's pretty painless. The shots came in these little cases with everything all measured and included so I'm sure once I get the hang of it, it should be pretty easy.

I'm meeting with a nurse March 17 to discuss MS in more detail and start filling out paperwork for betaseron. We're starting to wean Xander in preparation. Despite finding out that betaseron is probably ok to take while breastfeeding, the general feeling is not to chance it. Since he's 10.5 months we'd be weaning him soon anyway. So far we've stopped the going to bed feeding (which he doesn't get 4 nights a week while I'm at work) so this weekend it went pretty smoothly. I like that we have time to wean him, hopefully it will be better on my body. With Dominick I walked around with wilted cabbage leaves in my bra.

I'm really looking forward to the MS walk. It will be fun to spend time with the family. And we're even thinking that we'll have babysitters (yeah nanna and gramps!) so perhaps Dennis and I can enjoy a little night out--it's been far too long!