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3 Weeks

It has been 3 weeks or longer since the last time I felt well. When I say well I mean the ability to get up in the morning and function to the level that I can maintain my home, visit my family, go to the store. You know, the things we need to do to live each day.

Last month, I went to Seattle to see a couple of my doctors. During that trip I started to not feel well, and I have not felt well since. At first I thought I was just tired from all the traveling. So I gave it a couple of days and when I did not get better I figured maybe it was because of the fact I had a procedure in Seattle. I told myself maybe the sedation was lingering for some reason. After about 4 days I called the doctor who ordered a CBC, CMP, and UA. They determined that there was not an infection from the procedure and I was experiencing a flare-up of my MS.

The following week my neurologist ordered a 3-day course of IV methylprednislone. This is commonly used to treat MS relapses. This medicine really is supposed to work, but did nothing for me. At least it has not so far. This is why I am so frustrated. It has been a week since my treatments ended and I am still not better. I called my neurologist and she said that if this was from the MS the steroids should have relieved the symptoms. She sent me to the ER for a work up and they did a battery of tests only to put it back on the fact that this is MS. Sometimes I feel like a Human Push Pin. Or, as if I am going crazy. As if this is all a really bad dream and I just need to wake up.

I still do not feel good, and no one can seem to make a determination. I am so tired that I can barely function. The morning is not quite as bad as later in the day. I have this twitch under my left eye that has been there for at least 3 weeks. It does not really bother me, but you can see it if you look at my face. The pain and numbness has increased. Especially in my feet and legs. There is almost this feeling like I am walking on nails. I don't know how else to explain it. It comes and goes, but when it hits, it is so painful. I have had this strange taste in my mouth, dizzy spells, stabbing pains throughout the body, blurred vision comes and goes (even with my glasses on). The worse for me is the confusion. I get these spells where I can't remember things, even in mid-sentence. I am unable to form my thoughts, and things are just so foggy, confusing. It all comes in waves. None is at once, sometimes it is as my whole body is shutting down. It is difficult to explain.

I read not to long ago a woman who taught seminars to families who have loved ones with MS. She would put them in a room for an hour. She would tie their legs and arms with rope. Their hands and fingers with rubberbands. Then she would give them tasks like sewing a button and walking up stairs to do. She would have them do this just for an hour as an example of how we live each day. I am not sure that is really a good example. I do have a lot of physical problems from day to day, but there are so many aids. Walkers, wheelchairs. For me this relapse has been so scary because of the cognitive effects it has had on me. As much as I hate the idea of one day not having control over my body, that is not WHO I am. But to loose control of my mind. That is a whole other thing.


camille said...

Welcome Jaime! I know how you feel
Hey we have a lot in common! i noticed you work in the medical field too! I sent you an email also.Keep your chin up do you go to any support groups? i have one i go to all the time i add my 2 cents worth here is the link: they have a forum you can join too.
I hope to hear from you.

Jaime said...

I have never gone to any of the support groups. I will have to check them out. Thanks. I will check my email and get back to you.

personallog! said...

sorry to hear you going through a bad patch I wish I could help after speaking to you on msn.. Your amazing keep smiling! I have linked up our blogs and will help as much as I can we have a commuinity here and lots of info that may help...wishing you well and thanks for making me wake up! Speak soon!

Darksonne said...

I have to say that I hope things start getting better for you!Sounds like you deserve a break! Listen to the people on here...they'll help you immensly...they do with my fella!

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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