I've been going through this since 2003. Got dx'd in 2005 and then this year in January the neuro who saw the "artifact" lesions (oh in the corpus callosum--go figure) on my brain said I only had transverse myelitis. Then the next neuro (who got recruited away) saw one of the same lesions on my 2005 MRI that the neuro who dx'd me (both MS specialists) but didn't see the other and then said that I had clinically isolated syndrome. Hmmm....... As I said, I'm waiting for the next neuro (December visit) to see who he agrees with--if anyone.
Basically, you just keep plugging away and hoping to get answers. And see an MS specialist if you're not seeing one already. It helps to have someone really familiar with the disease tell you if they think you don't have it or if you have "possible/probable" MS. Unfortunately, it's a diagnosis by default--there's no definitive test for it.
I'm at the point where I can laugh about it but it still gets to me sometimes. And I've decided that I"m sticking with the MS dx until I see what the next neuro says. NO sense giving away the two lesion dx and one of those lesion confirmations--especially since the two lesion neuro saw them in the corpus calosum--which is ironic since Dr. Transverse Myelitis Only saw his "artifactual" lesions there too.
Yes, I'm working--full-time, but I have a relatively sedentary job, which is good. Fatigue's my worst problem in addition to some sensory symptoms. I was taking Copaxone and got sick of sticking myself every day. So I took a medication break for about a month or so in late 2006. Then I went back on it and stopped again when I saw Dr. Transverse Myelitis Only. I'll go back on it again depending on what Dr. December Neuro says.
I'm taking Baclofen prn for muscle spasms in my legs--it helps my restless legs too. But that, too, is going to depend on what Dr. December Neuro says as well. I don't have an iron problem, which can cause restless legs.
OH I hear you with the ups and downs of how you feel. That's normal. You get used to it after a while. And it gets me really angry at life for giving me this occasionally or really down--so I'll allow myself a pity party for a day or so and then snap out of it and go on with my life. You can't wallow in it or it'll eat you alive. And I'd rather live than wallow.
You learn to listen to your body, too. I have a lot of times where I think I can do more than I should and then I pay for it. But I guess I'd rather do that than not try and know my limits. For instance, I went hiking this weekend on Saturday and was pretty much a couch potato today and Sunday, although I did laundry and mowed my grass today.
One day at a time. That's how you take this fun process. It's like living life on a roller coaster. One minute you're up and the next you're down and you don't know what's coming because you're riding it blindfolded.
Hang in there. You're not alone! There are LOTS of people here who can identify with the frustration and ups and downs of it all.