Hi husband has not had the official diagnosis of MS yet, and this is all very new to us and, like most people, I want to know if anyone else has experienced what I am about to describe.
His symptoms began in May, with a numbness/hot flashes down his left side. He had an MRI which showed lesions, two in the brain, one in the spine. He developed problems in his legs-- no muscle control of his left leg from the knee down, said it felt "dead". And tingling in both feet. Doctor started solumedrol iv for three days. No effect until almost two weeks later. We switched neurologists already, and the new one agreed that its probably MS, and since he was still having symptoms, gave him two weeks of oral prednisone (which he is almost done with). Then he kept getting better-- regained muscle control, and tingling started going away. He could actually almost run again, so he was pretty happy about that.
However, a couple of nights ago, July 2nd, to be exact, he went to bed at 2 am and woke up at 4am and couldn't walk well. He's been using a cane. It was such a horrible set back for him. Devastated him. He was pretty depressed last night, and I'm glad he has asked me if people with MS go see counselors, which I told him yes, they do. Its such a big thing to deal with.
Anyhow, what I'm wanting to know is has anyone had this happen? Start to get better and then feel like you've gone two steps forward and 3 steps back? We called the neurologist on Friday and he wants to see us this week. I'm pretty nervous because the physicians assistant didn't say why he wants us to come in. I don't know if that means he has a new lesion, or what.
Everyone keeps telling him that it will get better, and it was there for a while, but now its bad again. And this is all the same first attack. Anybody else have a really bad first attack like this? How long can a bad attack last? I'm scared now that he doesn't have RRMS and has a progressive type.
Its very difficult with this setback. Prior to this one, he's had to deal with not being able to ride his motorcycle on the streets whenever he wants, not being able to race his dirtbike, not being able to take a new job flying (although he did find out he still can fly with MS), and the only thing that he still had was his music-- he plays guitar in a band. However, we had to play this weekend, and he couldn't play very well. He had told me that he can handle not walking, not flying, not riding motorcycles, as long as he could still play music. And now as if it were some cruel joke, he struggled with that, too.
His symptoms began in May, with a numbness/hot flashes down his left side. He had an MRI which showed lesions, two in the brain, one in the spine. He developed problems in his legs-- no muscle control of his left leg from the knee down, said it felt "dead". And tingling in both feet. Doctor started solumedrol iv for three days. No effect until almost two weeks later. We switched neurologists already, and the new one agreed that its probably MS, and since he was still having symptoms, gave him two weeks of oral prednisone (which he is almost done with). Then he kept getting better-- regained muscle control, and tingling started going away. He could actually almost run again, so he was pretty happy about that.
However, a couple of nights ago, July 2nd, to be exact, he went to bed at 2 am and woke up at 4am and couldn't walk well. He's been using a cane. It was such a horrible set back for him. Devastated him. He was pretty depressed last night, and I'm glad he has asked me if people with MS go see counselors, which I told him yes, they do. Its such a big thing to deal with.
Anyhow, what I'm wanting to know is has anyone had this happen? Start to get better and then feel like you've gone two steps forward and 3 steps back? We called the neurologist on Friday and he wants to see us this week. I'm pretty nervous because the physicians assistant didn't say why he wants us to come in. I don't know if that means he has a new lesion, or what.
Everyone keeps telling him that it will get better, and it was there for a while, but now its bad again. And this is all the same first attack. Anybody else have a really bad first attack like this? How long can a bad attack last? I'm scared now that he doesn't have RRMS and has a progressive type.
Its very difficult with this setback. Prior to this one, he's had to deal with not being able to ride his motorcycle on the streets whenever he wants, not being able to race his dirtbike, not being able to take a new job flying (although he did find out he still can fly with MS), and the only thing that he still had was his music-- he plays guitar in a band. However, we had to play this weekend, and he couldn't play very well. He had told me that he can handle not walking, not flying, not riding motorcycles, as long as he could still play music. And now as if it were some cruel joke, he struggled with that, too.
Long story there, I won't bore you with it, but MS sx hits everyone so different in its length and severity.
It makes me forget about my walking and bad balance for awhile.
Kathy
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