Hello from Illinois

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Hello from Illinois

Postby Spydre » Sun May 29, 2011 11:58 am

Hi. Good to meet you.

I was diagnosed with MS three years ago this month. We evidently caught it early. My first sign that something was wrong was a seizure out of the blue. I have epilepsy, but it had been controlled for 10 years. So a seizure was a sign that something was wrong. I also had tingling in my nose, cheeks and toes, but I didn't think anything of that. Because of the seizure, my epilepsy doc ordered an MRI, which showed the lesions. He was concerned about them, but wanted to watch me for a while before definitively diagnosing anything, but he warned me that it may be MS, and to watch out for symptoms.

At this time I was also going through medical issues, that ended up garnering a diagnosis of fibromyalgia (the same month as the MS diagnosis). I was having a lot of pain in my back and other areas of my body, and SI pain (although I think the SI pain may have been due to the MS, I'm not sure). In May, I suffered a full fledged MS flare, and it centered in my left hand. Numbness, tingling, and difficulty putting enough pressure on the keys to get a letter to register. My neuro did a new MRI, and it showed enhanced lesions. I was quickly put on Avonex, and suffered yet another seizure shortly after starting it.

Between the seizures, which were obviously no longer controlled, the pain, the issues typing, the fibromyalgia, and my worsening bipolar disorder, we made the decision to apply for disability, which was a rough two years before it got approved. And that doesn't even mention the issues I had with Avonex, I was sick three to four days after each weekly injection.

I was switched to Copaxone after finding my MS neurologist and her finding out I was having seizures and was sick much of the time on Avonex, and she determined that I would likely have that reaction on any of the interferon drugs. Copaxone was a lifesaver to me. Where I had been having relapses every six months (even though with milder case, I never ended up in the hospital), and having seizures frequently, I went to having no seizures, and I went for 16 months without an episode. Then, this January, I had another episode. At first it scared me, I had gotten to used to not having anything, but I realized it's only supposed to slow the progression, and not stop it. But my MRI showed 4 new lesions in the space of 5 months, so my doctor wanted to keep an eye on me, in case I got worse.

Well, I did. Now, four months later, I started another relapse, ironically on my wedding anniversary. So I went to my doctor and she's in favor of changing my medication, so that is what we are doing. She did a blood draw to check my blood for the JC virus, and once that comes back we are going to talk about Tysabri. The PML infections give me a bit of pause about it, but the results shown by people makes me anxious to start it.

In the mean time, it's been 17 days and counting into this flare. Last week I got a UTI, went to the doctor and he said it's very early, very light, and put me on antibiotics. I had felt worsening symptoms for a couple days, but those let up, and I haven't had any UTI symptoms since Thursday, but all of the sudden yesterday my MS symptoms got worse again. What I'm feeling in this flare is something I normally don't feel unless I have a high fever - nerve pain in my skin, almost like my skin has been scraped or sunburnt. So yesterday it got much worse. I'm getting by on anti-inflammatories and pain pills, and Elavil, what I was taking for nerve pain, has been doubled to 100 mg.

So that's it about me. I have a 14 and 16 year old son, and I've been married to my husband for 17 years. I'm 37, though in the last three years I've definitely started to feel older. I was just getting ready to start a new work out routine, but had to put it off due to this flare, material moving against my skin is almost too much to bear.
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Postby koopico » Tue Jun 14, 2011 1:15 pm


I'm not on the forum all the time, so I just saw your post!
Hi, and welcome to the forum!

Sorry about all "the stuff" you've been dealing with. Not fun! And I know about having multiple health issues, which makes life all the more challenging. (as if we need MORE challenges, right?)
But I hope you're doing better, or will be soon. I wish you luck!

Take care!
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