New to MS... but not really

I am a mother of two toddler boys. I was just diagnosed in March 2011 with MS after having 17 years of unexplained medical issues. Now I get to figure out how to add another juggling ball to my circus life.

[backali]

http://www.cpnhelp.org/home

I'm in no way promoting this. I still don't know how I feel about this being a cause, the right treatment course, etc. But I believe that unless we research as many different paths as possible, we'll never find a cure. So, if anyone has personal experience with this, positive or negative, or have any  thoughts about this I'd love to hear from you.

[backali]

Can't tell if I'm having a heart attack or I pulled my pec muscle.

[backali]

So we're at my mom's house while she recovers from knee surgery. Next week it's supposed to be in the 60s and raining. This is the last snow for a while. So we made the most of it. We went sledding & had a great snowball fight. We took Nanhie to the doctor I cooked different meals for mom, me & the 2 boys all day, packed stuff away, went sledding, had a snowball fight, took care of a rowdy 64lb puppy... I realized this evening that I only sat down to eat meals or drive to the doctor. I even stood the whole time at the doctor! The rest of the day was taking care of everyone else & just running around. I asked my 4yo what his favorite part of the day was. His eyes lit up and he said all of it Mommy! Today was amazing, well not so much the doctor visit, but I did enjoy the book you read to me while waiting. So, today was my favorite part of today. Totally worth the pain & sore muscles tomorrow. Love!.

[backali]

[backali]

personal update

I went back to my GI doc. My tTG level was originally borderline for celiac, 3 months of gluten free & no change. (not only with the levels, but also the symptoms) Back on gluten for 3 months & now my tTG levels are high (from 17 to 75). So now I get another upper GI biopsy done. Depending on those results I might be sent to chapel hill for further testing (I'm guessing a small intestine biopsy). But who knows. My MS is the same, although, my left eye twitch is now almost constant & crazy annoying. My neuro said he'd put me on klonopin if I wanted, but I'd have to decide if the irritation was worth the side effects. :/ And it doesn't help that every time I mention MS, my gp keeps saying "oh, I was diagnosed with MS, but it turns out I had a brain tumor". Thanks lady. Big help. I have to go back to Asheville in a week to stay with my mom while she's having knee replacement surgery. The boys & I will be up there for at least 3 weeks, so what ever is going on with celiac has to be put on hold until April. I'm living out of a suit case in my own home because everything I own is 6hrs away in Asheville. I'm even sleeping on the couch so my boys can share my bed (since their beds are in Asheville too). Not good for my back! Ugh! I'm ready to get back to a normal life, not split between 2 towns on opposite sides of the state. My life has been in constant flux since Nov. I'm just ready for normal. I don't feel like I'm at home any where & it's getting old.

[backali]

I was having a great morning..... then I got out if bed :/

I came upstairs & noticed my 3yo was in the bathroom, so I went to the other one then started the coffee. He was still in there, so I opened the door to check on him. He had pooed in his brand new pjs. So then he tried to sit on the potty to finish up. I'm not exaggerating when I say there was not any poop in the potty. And there wasn't any spot on the outside of the potty not covered in poop. I can't even begin to imagine how he pulled that off. He had some on his leg, but none on his hands. Unless he rubbed his butt on the toilet from top to bottom, I'm at a total loss. So I've bathed a kid, did a load of laundry and cleaned a bathroom before one sip of coffee. Can I get a redo?

[backali]

I hope nothing but the best year ever for all I follow & all who follow me. Here's hoping 2013 finds you in better health & spirits. Hugs to all!

[backali]

Paleo

I've seen quite a few posts bashing Paleo diet lately. I'm not an expert on it, but going gluten free, I've done some research. Here's the thing. Most people think that on Paleo, you eat nothing but bacon & fatty meats all day every day. That is simply not the case. They advocate eating at least 9 cups (not pieces , but actually nine measured cups) of fruits & veggies a day. Easier said than done on a limited budget, but I've managed. Since there are no grains for carbs in this meal plan, the fat from meats is used to give you the energy to burn. You don't live on just fatty meats either. Lean meats have their place too. I was told by my doctor to go back on gluten for two months to test for celiac. Prior to that I was on a Paleo diet for 5 months. I lost 30 lbs, didn't have joint issues & my LDL has gone down. In the one month since I started eating gluten again , my back has gone out twice &I have woken up with swollen joints almost every day. I'm not trying to push Paleo on anyone or bash anyone. It seems to help me. That's all I care about. I just have a pet peeve about people coming down on something without having correct information. I could go on and on with more research, but I don't care enough to do so. Hopefully I didn't offend anyone. I have a little drink in me & like to post whatever I'm thinking when drinking (haha! That rhymed!). Have a great new year!

[stormb0rn]

Just a little something I wrote when I couldn’t fall asleep the other night

[backali]

When I read something some stranger wrote that sounds like they are in my head. This.

[backali]

gf birthday

Well, this is definitely going to be a different kind of birthday. I'm having gluten free pancakes for breakfast & a gluten free cake (chocolate with peanut butter frosting & peanut butter cups on it). Every one kept telling me they didn't notice a difference in the cake when they made one. They must not have tried the cake plain. It is obviously different. I just hope the frosting will make it more normal. Now I'm worried about the pancakes. Oh well, things change. People change. Happy birthday to me.

[backali]

I love this! Gay men will marry your girlfriends!

http://www.collegehumor.com/video/6846855/gay-men-will-marry-your-girlfriends

[backali]

And the answer is... maybe?!

I had an upper GI a month ago. They did a few biopsies and I was to get the confirmation today. After the GI, the doctor said. It looks like you have celiac's disease, so go ahead and go gluten free. Since then I have had 1 piece of cake with gluten in it, and that's it. I've made sure that nothing I ate and none of my products had gluten in them. I was going in to my appointment today knowing that he was going to confirm this crap and I was going to have to get even more strict with my diet. Right now, my sons and hubby still eat wheat bread and other gluten foods. Once this was confirmed, all that had to go so I didn't have cross contamination. So, the appointment. I didn't have a baby sitter, and the boys came with me. They were good for the most part, but the 3yo got antsy and it was hard to concentrate on my conversation with the doctor and stop him from getting in to everything. The biopsies were inconclusive. The flanges that are destroyed by gluten are still present in my stomach, but Mt TTG levels are low and indicative of celiac disease. This could mean I don't have celiac or it's just beginning to effect me. Next step is to send my blood off for celiac genetic testing. Evidently there's a gene that can indicate celiac. 40% of people today will be negative for this gene and it is absolutely not celiac. The other 60% test positive and may or may not have celiac. If I come back positive, I have to start eating gluten again for 3 or 4 months and then have more biopsies done. If my TTG levels are still low or if there is any damage to my flanges, then we will assume I have celiac. If it's the same as now, then what-don't know. The doctor said that celiac can mimic MS, and sometimes people are thought to have MS, but they really have celiac. I told him I had lesions in my brain, neck and spine. He said oh, I'm sorry, you do have MS. (haha) My body can't make anything easy on me. It has to show the most bizarre symptoms and never follow the black and white diagnosis for anything. It does what ever it wants to, and science and me be damned! Ugh! With already having one autoimmune disease, it is very likely my genetic marker will come back positive and I'll be right back at square one. This sucks!

[backali]

I have been gluten free for 15 days now. These are a few of my new dinner creations. At dinner last night, my husband said (while getting his 3rd helping) "This gluten free eating is the shit! Wheat is very over rated!" Lol! I'm loving all these new dishes especially Ancho Chile rubbed flank steak and the Rosemary red potatoes. I haven't tried a few dishes because gluten free food is a LOT more expensive! We live on a very fixed budget and it sucks having to go from generic flour to rice flour, xanthem gum and potato starch to get the same texture. I've never had serious digestive issues and I've actually had more issues since I've gone gluten free. My doctor also said that celiac often mimics MS, so symptoms that I attributed to MS could be celiac. I was really looking forward to not feeling as fatigued and run down, but no such luck. I'm going to stick with it though. I have my next appt end of Aug, and that's when I'll get the biopsy results. The doctor made it sound like there was no doubt and told me to go ahead and go gluten free.

[backali]

Spiderman cake I made for my son's birthday! :o)

[backali]

I saw your post in the MS tag. If you have a Trader Joe's in your area, they sell a gluten free pasta that is really delicious. I'm still up in the air with some other products but ended up meeting with a nutritionist to help build a menu. I started cutting out gluten before I was diagnosed but now even more so. Good luck.

Thanks for the help. No Trader Joe's here yet. We just got Whole Foods, so maybe soon. Seeing a nutritionist is a good idea, especially with a picky 3yo (I think he might have celiac too). I'll definitely have to look into that.

[backali]

Update

I haven't been on here for ever. I just had an upper GI and even though the biopsy results are not back, my doc is fairly certain I have celiac disease. Yay! I asked if I haven't had any side effects how is this possible. He said that a lot of the celiac issues mimic MS. So it is very likely I have our and just thought it was MS. Ok. Wait. I don't have very many MS issues either. What? I don't want to remove bread from my diet. It's my drug of choice! I spent 3 1/2 hours looking for gluten free foods that not only I could eat, but convince my hubby and 2 little children to eat! My youngest turns 3 in a week. He can't wait for pizza and cake. I will try some gf recipes at some point for each of those, but not right now. Everyone keeps telling me that if there was a good time to be diagnosed with celiac, it's now. Every one is doing it, so there are tons of options these days. And I won't believe how much better I'll feel when my body is working the way it's supposed to work. But I just want to mope. I have 2 kids, 2 dogs, and am living with MS in this 115 degree weather. And damn it, I love pasta and garlic bread! I'm just treating it like I did my MS. In order to live better, I have to take this med I don't want to take. Now, I have to change the foods I eat, even though I don't want to. I got the Avonex injector. I forgot to call the nurse back after she called to set up a time she could show me how the damn thing works. Thankfully it came with directions. 18 steps. Really?!? I did it and blood starts dripping out of the injection site. Great! This shit hurts! I wanted to get this so I didn't have to depend on anyone else to shoot me up (see previous post on my issues with that). I'm 90% sure I did it right, but I guess I'll call the nurse to make sure. Also, it says you can only give our in your thigh. I was told I'd be able to self inject in the arm for the first time (reason 2 for getting this pen) and unlike Copaxone, this cannot be removed from the injector. I'm stuck (no pun intended) with these for 3 more weeks. I was really hoping one thing would go my way. Ok. Enough brooding. Now to figure out how to keep going.

[backali]

I am so proud of you! Your cake turned out beautifully! Keep up the good work! Really dont have anything to ask. Just wanted to make that statement....lol

Thanks! Now to get someone to pay me for my masterpieces! :o)