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Old 12-13-2007, 11:03 AM #1
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Hm. Well, MS still sucks and having it doth sucketh too. I'm not snapping back from my road trip as I had hoped, but still waiting.

For the first time in my life, I think I'm afraid of what is ahead (if I'm involved, there will surely be danger).

On the up side, I don't give a crap and I'm just going to keep on doing what I want to do and worry about the rest later. If I lose my reckless abandon, I will have lost all.

I am heading out today into the retail jungle to make use of all my $10 free merchandise coupons. It must work on most people to entice further buying, but for me, it's a game to get free stuff. I'm thinking socks.
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Old 12-13-2007, 12:20 PM #2
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Can I just say I feel like crap? Probably not.

I just got back from my neuro appt in Portland for this trial. Flew over on Monday, uneventful. Spent all day Tuesday at the hospital. Flew back Wednesday, uneventful. All in all the flights went very smooth! That's a plus! Yeah!

My day Tuesday: MRI first thing in the morning. Then my appt with the coordinator for the battery of tests. You know, the wonderful "put the pegs in the hole" and the PSAT, and the walk. Then the exam by the neuro.

That didn't go so well. When I asked if I could do one day of steroids to get through this damn brick wall of fatigue, it would put me out of the study. Or maybe get me out of the pain cycle I am in, it would put me out of the study. Dangit...now what. So, he did an exam and my EDSS went up one point (all sensory - can't feel the pin pricks!) so no "protocol defined exacerbation." So, no steroids. But what he thinks is going on is a sinus infection which could be root of the problems...makes sense.

I've had this stupid sinus stuff for over a month. Seasonal stuff for me so I don't pay much attention to it. I am not sleeping well. Changed my meds to Soma, seems to be helping. Changed my pain meds from Vicodin to Nov10. Already upped my provigil to 400mg, doesn't help at all.

They are going to have the radiologist read my MRI (which is sealed) for non MS related pathology. But I am calling my PCP today for antibiotics.

Maybe not a rant, but I am so tired, and in pain. Not had this kind of pain before. There is a lot of stress in my life right now, and I know that is a contributing factor. Just too much going on.

The bright spot was that I got to meet an employee at the hospital with whom I have been emailing who is a member of another MS forum. She surprised me while I waiting for my MRI. Then afterwards, we had coffee...her treat! It was nice to meet her!

The icky part was the hour it took the lab to draw the 13 vials of blood from me ...only two more appts until the end of this part of the trial! Two more blood draws Tippy!

Socks AMN???? I LOVE SOCKS!!!!
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Old 12-13-2007, 02:51 PM #3
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Bummer FG, looks like this thing is really kickin' yer butt again. Ugh, I hate it, and I hate what it does to us. How soon until the trials are over? I thought it was Jan. or Feb.

Sock lover here, too. I'm a bit of a sock snob, I have certain kinds I like and the rest are garbage. I survived the retail jungle and now wonder why I bothered. I didn't score any socks, no one had the kind I like, so I ended up adding to my enormous jammies collection. Not sure why I'm so addicted to the stupid things, maybe it's just that they're my main wardrobe anymore.
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Old 12-13-2007, 03:07 PM #4
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Sorry you didn't score any socks! Bummer! I found some really cool socks in Boston!

This phase of the trial is over April 1st. It's bad when I ask for steroids. Even one day. But I guess since I am not on anything except symptom meds, I guess we can just play with them.

I have an appt with my PCP this afternoon re: this sinus crap. Actually, not with MY PCP, he's on 3-month sabatical to study for boards. I am seeing one of the other docs. If it was him, he'd just call in a 'script, but the other docs want to see me. They don't know my hx! Yuck. Now I gotta get dressed and go out in the cold here today - it's 24 degrees! But the sun is shining!
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Old 12-13-2007, 07:00 PM #5
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Sinus infections suck, too!! Any kind of infection i gonna make your MS sympoms rise out of the shadows and laugh their heads off at you.

I hope the POPCP can give you something to help. Congrats on the socks score..



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Sorry you didn't score any socks! Bummer! I found some really cool socks in Boston!

This phase of the trial is over April 1st. It's bad when I ask for steroids. Even one day. But I guess since I am not on anything except symptom meds, I guess we can just play with them.

I have an appt with my PCP this afternoon re: this sinus crap. Actually, not with MY PCP, he's on 3-month sabatical to study for boards. I am seeing one of the other docs. If it was him, he'd just call in a 'script, but the other docs want to see me. They don't know my hx! Yuck. Now I gotta get dressed and go out in the cold here today - it's 24 degrees! But the sun is shining!
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Old 12-13-2007, 07:09 PM #6
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I'm sorry your not poppin back as before, Cindy. That does sucketh.

If you go to all that trouble to go out for cool socks, you'd think you could, at least, find some. Oh well, such is life. Bah!!



Quote:
Originally Posted by AfterMyNap View Post
Hm. Well, MS still sucks and having it doth sucketh too. I'm not snapping back from my road trip as I had hoped, but still waiting.

For the first time in my life, I think I'm afraid of what is ahead (if I'm involved, there will surely be danger).

On the up side, I don't give a crap and I'm just going to keep on doing what I want to do and worry about the rest later. If I lose my reckless abandon, I will have lost all.

I am heading out today into the retail jungle to make use of all my $10 free merchandise coupons. It must work on most people to entice further buying, but for me, it's a game to get free stuff. I'm thinking socks.
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Old 12-13-2007, 07:51 PM #7
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Did you have to mention the red stuff FG?

I feel like crap also.

All the MS demons are coming back and at once!

Hands, feet, feel like pins and needles!

I can't think straight!

I am tripping again. (over my foot...jerks!)

Stabbing pain that comes and goes in my leg.

This needs to all stop.

I have lots to do!

I really do need to be Tuffy. (but I don't think I can.)
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Old 12-13-2007, 09:51 PM #8
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I really am ambivalent to discuss this as I was hoping things were going to be different at this time of the year for us, but alas it is not. Unfortunately, I have still been unable to conceive or maintain a pregnancy, and we had said that if by the end of the year if I was not pregnant I would start on Tysabri, and we would start on the adoption bandwagon.

While I feel happy about starting back on something for my MS again, I feel like I have failed in the female department for some reason. I know there are many others out there who have gone through what we have, but for some reason at this time of year, it's really harder on us than at any other time of the year.

I guess it just reminds me of all the ways that my body has failed me already. At least I still have you lot!
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Old 12-13-2007, 10:28 PM #9
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Poopy, Chris...I'm so sorry about no Baby.

I do hope that Tysabri works wonders for you....that's the least it can do.

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I really am ambivalent to discuss this as I was hoping things were going to be different at this time of the year for us, but alas it is not. Unfortunately, I have still been unable to conceive or maintain a pregnancy, and we had said that if by the end of the year if I was not pregnant I would start on Tysabri, and we would start on the adoption bandwagon.

While I feel happy about starting back on something for my MS again, I feel like I have failed in the female department for some reason. I know there are many others out there who have gone through what we have, but for some reason at this time of year, it's really harder on us than at any other time of the year.

I guess it just reminds me of all the ways that my body has failed me already. At least I still have you lot!
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Old 12-14-2007, 12:21 AM #10
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I guess I would have to say the thing bothering me most is my legs at night. I swear if there were a way to take the temperature on your foot mine would be over 100! But I feel very blest that that is the biggest thing I have to deal with right now. Last night I wasn't able to go to sleep until after 5 AM. So tonight I'm taking an extra Klonopin cause I have got to finish my shopping and I'm going to have some rest to do it. An my Mom is thinkig about sending out a search party for me since she hasn't seen me in a week. I take care of her checkbook for her and I dread going over and doing that.
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