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Old 02-26-2009, 03:08 PM #11
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Thumbs up Hey Kathy!

Isn't is amazing looking back? It is wild! Life can throw you some WILD curves, but you just gotta keep on keeping on.......

You are going to make a wonderful mom!You love your others kids so much that any child you have is going to be blessed and lucky!

You are an inspiration for the rest of us - I know reading you and Redtails threads have gotten me through a lot of tough times and I want to thank you for always being there for me. I know this disease would have gotten me down a lot more if I didn't have you 2 to talk to!

09 is going to be our year! I can feel it!

Erin
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Originally Posted by Scots Kat View Post
Hi Erin and everybody else,
Thanks for this - it was lovely to read, and I can totally agree! I've been diagnosed for 5 years but a year ago I was at my worst. Granted my worst hasn't been as bead as you, but that is probably only because they knew what was wrong with me and able to catch it sooner! A year ago I was in hospital getting my first round of IVIG, couldn't lift a spoon with soup on it to my mouth. I couldn't step up one step to my house without help. Couldn't do up my bra in the morning, needed help to do up buttons on my trousers or shirts, some days I couldn't even step into my undies without help (thank heavens for a patient and wonderful husband - it must have been like living with a 90 year old insted of a 29 year old, but he didn't complain once). I couldn't step into my tub to shower and when I did get in the shower I couldn't hold my hands up to wash or dry my hair. My stubborn side wouldn't let me give up and I only missed 4 days work during this whole period. I had to use a different entrance to the school to avoid stairs and had my lunch in my classroom to avoid going downstairs to the staffroom.

A year on and I can do pretty much anything i need! I'm swimming twice a week with the kids and doing loads of other activities. I can walk to and from work on my own most days and can go grocery shopping independently - this is stuff I thought I'd never be able to do again! A year ago I really thought life as I knew it was over, but I've come back so strong. The only worry I have now is that I'll relapse at some point. It would be really hard to go through that again! I guess we never know what will happen though, whether you have a condition or not, so I just take every day as they come and i am SO thankful.

Next challenge - having kids of my own.... I would so love to be a Mom but I'm worried about putting my body through everything. It's something my husband and I have been discussing a lot lately and we think we'll maybe wait one more year before trying seriously. I'm 30 now so that biological clock is ticking away! If it doesn't happen we'll probably try to adopt or foster kids, but we'd love to have a child of our own.

Happy thoughts to everyone! Spring is starting here in Scotland (the weather is turning and the flowers are budding) so i'm Spring cleaning my house, and my mind! I've been really trying to keep my mind focused on the good, and it's posts like yours Erin that help me remember just how much good there is!

Take care everyone,
~Kathy
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Old 02-26-2009, 03:14 PM #12
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Thumbs up Yes! Yes! Yes!

Yes I did! If you look in the mirror when your eyes/hurt and are having other problems, you may want to brace yourself........I did it @ my son's school and my left eye was waaaaaaaaay wonky! It was soooooo off center! It scared the bejeebies out of me!

I suffered from constant headaches toward the end - right before my dx - every day - all day.........my eyes were "swimming" around in my head. I put a cold compress on them now. My neuro gave me his soda can to rest my eyes and they went back to normal for a few minutes - it was great!

Wating is the hardest part! The not knowing is the hardest part, as well........hang in there! They are going to diagnose you and get you back to yourself in no time. It won't be overnight, but it will happen! You gotta believe that!

From all I've read, you are really tough and brave -you can do this!

Erin
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Originally Posted by nemsmom View Post
I think the waiting is just getting to me. The doctor I normally see is so compassionate, I have a hard time understanding her, but she is great. She is not the doctor I saw for the biopsy though, I saw her boss.

Just a couple more weeks and I'll know the results. I think this test will say what is wrong with me, I just don't want to get my hopes up to be disappointed again.

Oh and I was wondering, when you have breathing problems, do you ever get a pressure pain in your head?

My primary doctor also cares, he knows it's something he just doesn't know what. That's why he has sent me to specialists.

I don't think we could really afford to keep looking for an answer if we don't get it now. The medical debt is tremendous already. That and I really don't want to go through any more tests. If a doctor is going to diagnose me they are going to do it with the tests that have already been done.

I want to thank you all again for being here. It helps so much to have someone who understands. My husband is so supportive and he tries so hard but I can tell he is scared too (poor guy has already watched me go through three near death experiences) and I know more about this than he does.

Okay I can't think right now, thanks again.

Kristie
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Old 02-26-2009, 03:16 PM #13
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Thumbs up See? Better already - in that respect!

Good night! A brain tumor? MS? Things look better already after that!

How are you today? Are you taking your meds? How is your wife?

You are RIGHT! 09 is going to be OUR year! OUR year!

Erin
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A year ago today I was told I either had MS or a brain tumor that looked cancerous, lol.

It's awesome you're doctors are finally on the right track and you're starting to get better! Gonna be a good year :P

Redtail, lol.
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Old 02-26-2009, 04:20 PM #14
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No joke. I was stoked to find out I had MG considering the alternatives..not that this is any walk in the park, but from what I had read and the little I had experienced with the alternatives...I was actually OK with it. I was eventually told it was an arachnoid cyst, his name is George and he's in my temporal lobe, lol. Feel like I had to name it!

Yeah, I started taking my meds again. It's just confusing for me. During the week I feel exhausted all the time, I go home, eat, and just fall asleep(or lay down) most days. During those times I take 3-5 60mg mestinon a day. But, this weekend I was able to rebuild half of my fence and I hadn't taken any meds at all....It's just really confusing me because it doesn't make any sense at all. Sometimes I feel awful and other times I feel like I could jog a mile....frustrating and so confusing : /

My doc is considering steroids or Imuran for me later this year if I continue to convert, so we'll see(she's pretty sure I'm in the process right now). She says I'll be a lot easier to treat when that happens, so this year should have a lot in store for me
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Old 02-26-2009, 05:20 PM #15
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Thumbs up Hello Gbyrd!

Isn't it wild how MG waxes and wanes? I mean I feel AMAZING one day and like crap the next........though I must say @ 60 mgs of pred I have more energy than I have in a while.........That feels AMAZING! I am able to take care of Mike and Devon - they are both sick right now, and cook dinner, and get all my other work done - I am sooooo grateful!

You and I have the same dark sense of humor - I love that!

I am on both Imuran and pred right now......I think they are gonna do the job! I was on Cellcept before and it just didn't work..........no biggie!

Great to hear from you!
Erin

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Originally Posted by Gdbyrd View Post
No joke. I was stoked to find out I had MG considering the alternatives..not that this is any walk in the park, but from what I had read and the little I had experienced with the alternatives...I was actually OK with it. I was eventually told it was an arachnoid cyst, his name is George and he's in my temporal lobe, lol. Feel like I had to name it!

Yeah, I started taking my meds again. It's just confusing for me. During the week I feel exhausted all the time, I go home, eat, and just fall asleep(or lay down) most days. During those times I take 3-5 60mg mestinon a day. But, this weekend I was able to rebuild half of my fence and I hadn't taken any meds at all....It's just really confusing me because it doesn't make any sense at all. Sometimes I feel awful and other times I feel like I could jog a mile....frustrating and so confusing : /

My doc is considering steroids or Imuran for me later this year if I continue to convert, so we'll see(she's pretty sure I'm in the process right now). She says I'll be a lot easier to treat when that happens, so this year should have a lot in store for me
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