ROTFLM.........O!!!

I never thought of it like "THAT!"

I used to be on monthly infusions of IVSM with my old neuro...my current neuro has only ordered one-3day infusion. I feel better temporarily, but the sxs come back rather quickly.
I actually like being on it. I can walk like a regular adult, and the spasms are reduced. But my neuro says it fries my brain, so he's very conservative with ordering it. That's why I never bother calling him now when something new crops up. Why bother?

I never said you meant that! You people are just trouble-makers.

Craig - thanks for the comments. Because I am so new to MS, my Neuro said to call when I have flares or symptoms and they will help. When I was initially diagnosed, I didn't have many symptoms and I thought maybe it was smooth sailing for me! Now it seems like I have a month of feeling OK and then two weeks of strange symptoms. In the meantime, I work fulltime and put a smile on my face most days at work. Thanks again - it is always reassuring to hear from all of you who haved been here already. You are so right, I am SO glad the buring is in my leg - it could be so much worse!

Thanks Erin - I think I will ignore them next time too.

That is exactly what my pain felt like - Ice-pick stabbing above my knee and then burning above my knee. It is hard to describe and I have definately never felt anything like it before. After three days, it got better a little at a time. Now I have sesitivity when I touch the skin in that area but nothing I can't live with. Annoying to say the least! But the pain in the beginning was pretty intense. I see my Neuro the end of March and will fill him in on my new symptoms. Thanks for your comments!

Thank you! I thought at first that the steroids were going to cure the pain but now that I am off of them, I realize that you are so right, the symptoms are still there. I am also new to BetaSeron and have only been on the drugs since the beginning of December. My Neuro's nurse said that the BetaSeron will take about 6 months to get the meds in my system. I just hope after all of this, that they will work. So frustrating! All in all, I am doing OK as I feel good most days. Thanks again for all your words of encouragement and your support

If I were you, I'd keep a log of when it happens, and how long it lasts, if you notice when it goes away or not. I sometimes dont notice exactly when a symptom disappears. I know that a few people on here, myself included, have noticed a seasonal theme to some of our symptoms.

I tend to get burning feet around Xmas time, vision symptoms in the spring and summer. This year tho, I've been pretty much yo-yo-ing back and forth in a flare every 4 to 8 weeks. I'm getting tired of it. It's a pain in the bleepity bleep.

Erin, I read your post a couple of hours ago and kept thinking about it because your first paragraph is something I share with new people all of the time. Being your own best health advocate includes what you've posted. It helps the patient stay in tuned with their body and assist the neuro or other specialist in understanding the challenges.

Thank you Erin!

You know what's weird Craig, when I've told a few people (relatives who are also in the medical field) that I keep a log (most of the time) of my symptoms, I get comments that I'm "making the symptoms stay" by concentrating on them. It ticks me off, because they're basically saying that I should just be a "good little patient and listen to my doctor and not go looking stuff up".

My neuro really hasnt done much for me except answer questions and give me a couple of Rx's for steroids, a couple of rounds of IVSM and a Rx for migraine meds.

If I look up research about new treatments or medications, or print something out for him so I can ask him questions about it. I pretty much get blown off or I get the hairy eyeball from him. (regular doctor does that too, but at least the regular doctor gives me fun stuff like PT to do. Regular doc also will listen to me first before telling me "NO!")

Sometimes I get the feeling that my neuro doesnt like informed patients. I'm giving him informed consent to treat me, I should at least be actually informed and self-educated about the treatments that I might want to try or he might want to give me.

When I've actually shown a printout of the symptom diary to my neuro, the guy just ignores it, and I wouldnt be surprised if it ends up in his "outgoing file" after I leave. So, I quit wasting the ink and paper on him. Still, at least keeping a log helps me remember when things start, so that when the neuro DOES actually want to know how long some MS crap has been going on, I can tell him.

I had been keeping little notes on the calendar on my iMac because my Windows computer has issues with Word lately, but hadnt figured out a way to transfer the information in the iMac calendar to anything or print it out. (our printer set up at home sucks) and I just this week figured out how to sync the calendar to my iTouch. So at least now I can look stuff up whenever I want to, since the Touch is pretty much strapped to my hand all the time. (just wait till I get an iPad...I'm hoping for the smaller iPad2 that's rumored to be coming...I'll have a whole diary of symptoms on that thing)