Doin' alright... for the shape I'm in

Well, so far so good with the Copaxone. At each injection, I do experience the burning... and with some injections I get that 'knot' like feeling/appearance at the injection site.

I do have to say that it's been rather easy adjusting my schedule to include a shot everyday. I guess it's something that you just have to live with when living with MS. I'm still eager to hear about what's going on with BG-12 in the FDA approval process.

I really haven't been doing a whole lot lately. Seeing as the high has been over 100 each day, that's not including heat index, I'm pretty much confined indoors. The cooling products that I have do help deal with the heat... but of course it's still hot in general.

I did go to a softball tournament and we had a RV at the park, so I had quick access to the AC. When we got there, the ground was so hot... the black rock gravel was melting the soles of my flip flops, if that gives you any idea of how hot it was.

I've basically been a couch potato... reading books. The heat not only makes me fatigued, but makes my cog-fog bad.. and my spasticity. I did switch from Baclofen to Tizanidine... that change is a good change... I'm not saying my spasticity is completely gone... but it's not as bad now.

I have gotten a lot of feedback, concerning the meds I had referred to in my previous blog, so I thought I would give a more in depth talk about that.

So there are three that are being spoken about that are awaiting FDA approval: BG-12, Teriflunomide, Alemtuzumab.

So here is the overview...
BG-12, oral pill (twice a day). It has been on the market since the 50s' to treat psoriasis. The side effects are mild; (i.e. headache, nausea, etc.) and in most cases subside after a month's use. It's also been shown to repair damage done to the myelin sheath.

Alemtuzumab aka Campath and/or Lemtrada, infusion (5 infusions cycle). It has been used for cancer, however, once it's in your system... there is no "washing it out". The symptoms are a little bit more severe than BG-12; (i.e. Anxiety; diarrhea; fatigue; headache; loss of appetite; muscle pain; nausea; stomach pain; trouble sleeping; vomiting)

Teriflunomide aka Aubagio, has been found in Rheumatoid Arthritis Meds. Some side effects (i.e. nausea, diarrhea, colds, mild hair loss and/or thinning, back pain and elevated levels of liver enzymes)

So that's just a basic overview of what's in the MS treatment future. I'm glad to hear the strides they are making in the MS treatment options.

I am still waiting to see more things being studied for the MS symptoms. Yes I understand that they are really striving to help slow progression if not stop the progression in MS... but we also have to live w/ the symptoms everyday. 

I also want to hear more about research that is looking in to, cause of MS.. give us an insight as to how we got this disease in the first place. 

One thing I did find interesting... is I saw a talk with Montel Williams, speaking about his CCSVI experience. He basically stated he still has MS... but his heat intolerance seems to have gone away. So while there were plenty of believers that CCSVI was the cure of MS... I am wondering if it will be looked in to more for the heat intolerance factor for those with MS. It makes sense that if the vein is made "normal" that the blood flow would be the way it needs, and that would in turn control the heat intolerance... just a thought of mine. 

Something else I've heard a lot about, and I also wrote about it before, is MS in the media... how we have celebrities or famous people with MS... and they aren't "representing" MS the way it needs to be represented... and the bottom line is, What the hell is a person with MS supposed to be like? We are all so different... How could we have ONE person representing MS? I guess in my opinion, I want MS to be known, like Cancer... I want people to be educated about MS in general... not so much having one person representing what it is. 

The bottom line is... MS can be disabling... either visibly or not... or both. There are so many ways MS can effect a person... there isn't just one definition of it. If I had a dollar for as many times I heard.. "You look so good"... I'de be rich. The bottom line is, I try not to get upset about that anymore, because they are just trying to be nice... and nobody can "hear" my body screaming from the inside. 

Well that's all from me for now, back to being lazy on the couch w/ a book :) 
BTW -  50 Shades of Grey is AMAZING! 

xoxo 
Ashley

Adjusting to the change

Well, my Copaxone nurse came out on Friday morning and showed me how to inject copaxone.... It burned like hell but I've been through worse.

So I've been doing well with taking my shot... I've been setting an alarm on my phone so I don't forget to take it.

I did however make a "boo boo" yesterday with my shot. I went to inject, hit he button and nothing came out.. (I'm using the auto inject) well silly me forgot to take off the lid cap thing.

So I went to take it off and medicine was leaking everywhere since I had already pressed the inject button... Can we say oops!

This is definitely going to take some time to get used to. But hey, I'm surviving with it. I took a fall Thursday evening ... Clumsy me. It's taken some time to get feeling better, but I'm doing better.

I basically relaxed all weekend, thanks to my mom being here.
Because on Friday night.... Guess who ran smack dab in not the corner of a table... This girl. Double injury!

I feel better now that I got to relax and take it easy, but this heat is still getting to me. I feel bad cause the boys keep wanting to go outside and play and i just can't do it.

So I'm trying to make it fun for them being inside. I think we're going to head to the store and pick u some board games... And I think I'm gonna get them some movies too.

I feel bad that I'm "trapping" them in the house... But at least I can still function by doing so. I try and make things fun for them... since I can't be outside with them.. and I can only hope I'm doing a good job of it.

So all in all I'm not just adjusting to the change from Tysabri to Copaxone... but also the change in my spasticity medication... and this Texas heat. I hate having the feeling that I'm letting my MS keep me in doors... but then I have to sit back and think that a lot of people can't even be outside right now, not just those that have MS.

I try REALLY hard not to let MS control my life... and always be my topic of conversation, but it's hard not to talk about my MS in conversation all the time, when it's effecting me all the time.

I think that's why I'm finding it easier to talk to people who have MS and build friendships with them, rather than try and talk about it with someone who doesn't get it. My husband gets it in a sense... because he in a way has MS... since he helps me and cares for me... but then I just don't want to over load him with all of my feelings... he already does a lot for the MS community as it is... A lot more than a lot of caregivers do.

In a way I feel that with every change I have in a medication to slow progression, it's like going through the whole diagnosis phase again. Maybe third time is the charm? Let's hope so.

Well, it's hot... and it's time to watch some G-Force w/ my boys!

xoxo
Ashley

Goodbye Tysabri...

Well, here is my update to my previous post...
I went to my neuro on Wednesday & we had a LONG discussion about what we were going to do.

So to get the spasticity issue solved, we decided to taper off the Baclofen & start on Tizanidine. Just waiting for the script to be filled and I will start that soon, already trying to taper off of Baclofen but not having the Tizanidine to compensate is very difficult and painful.

So he asked me what I would pick out of the approved medications we have right now to slow progression. I deliberated and eventually answered Copaxone, due to it's success rate. My neuro agreed with me & we put in the paperwork for me to start Copaxone, so just waiting on that at the moment.

I understand that I shouldn't just wait for BG12 to come out... not being protected during that time. I of course would worry about relapsing and my neuro also expressed his concern about not being protected.

So at least now, I can say that I will be taking a medication to "try" and slow the progression. I'm not trying to sound negative at all about taking a med to "try" and slow progression, but none have shown to STOP progression, that's what I'm saying.

I'm also not going to get my hopes up right now, because that seems to jinx it all lol I just sit here and believe there is a plan for me and it will all fall in to place.

Even though I haven't been diagnosed all that long (diagnosed 8/30/10) I have still done A LOT of research and stay very active in the MS community.

I'm really enjoying that there is all of this new information coming out about MS and the trials they are doing. But I'm just sitting here wondering, when the SYMPTOMS are going to be addressed. Yeah, I want MS to be cured... and for better meds to be available... but I also want something to address the damage that has already been done by MS as well.

And while I hear people say "they're getting closer to a cure"... yeah they could be, but how can you be  moving closer to a cure, when you are not even sure of the cause..?

I mean, I just don't want everyone in the MS Community to get their hopes up, like they did when CCSVI was first being brought up. I just don't want statements to be made and not followed through with. It's very upsetting, and there are some people with MS that take everything that researchers say and studies say to heart.

Well, hopefully the Copaxone will be ready for me soon, I'm in a way excited to try it out. I will keep everyone updated on the journey... Be well & STAY COOL! So hot outside! I haven't been going out there at all lol Any errands needed to be run can wait till it cools off.

xoxoxo
Ashley 

My future and MS

Well I spoke to my neuro's office and I'm going in on Wednesday (July 18th) to talk about my options since I no longer feel comfortable taking Tysabri. Also, because they recently increased my dosage of Baclofen to 100mg a day. It's not completely controlling my spasticity, but it is helping. However, the side effects of taking the much Baclofen is really taking it's toll on me, making me extra drowsy.

So, as I'm sitting here, thinking that my only option is going to be to wait till BG-12 comes out... It makes me think about having a flare during that break time... With my MS, if I'm not on a medication to slow progression, it is really aggressive.

I've had people ask me... Well aren't you worried about being in a wheelchair... well with all honesty, I've been in a wheelchair, so I guess I can say that nothing will come to a surprise for me. I've been in a wheelchair, and worked my way out of it. I just feel like I need to focus on my day-to-day well being, and not the what could happen... because nothing is certain.

I know that people see me on the conference coverage (https://conferencecenter.msworld.org/) and think, oh she is fine... I am in pain... every minute of every day.... but eventually you get 'used' to it... and just learn to live with it. I just feel that I'm not going to let MS keep me down from doing what I love, and that's trying to help all those living with MS.

Maybe now that I know more abut MS and what can "cause" a flare, I can help try and prevent flares... Whereas before, I didn't know I had MS.. and I didn't know what was causing my issues.

I guess I feel more at ease knowing that I can have a flare, not being on a medication... then sitting there for a two-hour infusion, wondering if I'm going to get PML. I understand everyone's views... and the fact that the chance for PML does not increase until have 24 infusions of Tysabri... and you are closely monitored. But by looking, the signs and symptoms of PML mimic MS symptoms.

Just a small clarification of my "odds with percentage"... I have two kids... both of those I conceived while using 99% effective birth control... so now you know where I stand on my chances w/ the percentage of chances.

I just have this feeling in my stomach that I'm SPMS... and it's not being said. I mean, there are so many people that have MS...that are older and have had the disease for a long time... and mine is more aggressive than theirs... and they just flat out say, "It sounds like you're SPMS".

So on my recent MRI... I had NO new activity! Yayyy! But, it stil noted that my previous lesions were still inflamed.... even being on the Tysabri.

I don't know where my future with MS will go... but I know that I'm going to focus on the day-to-day things... and whatever the future brings, I will deal with that when the time comes. You have to think that right after I was diagnosed, I had a really bad flare, that left me in a wheelchair/walker & the right side of my face paralyzed. I've dealt with a lot already... and I have the support to deal with whatever comes my way.

I'm in no way saying I'm going to be "miss happy go lucky" if I have a flare after stopping Tysabri... Cause I will be mad/upset.... but that's normal. My outlook on MS in general will still remain the same, and I will still continue to try and make a difference to all those living with MS.

So, for the future of MS, I have: BG-12; Alemtuzumab; & Teriflunomide to look forward to, as long as everything goes as planned.

I have to be thankful about the 'timing' for when I was diagnosed... because look at all the progress they are making in studies, where as, 30 years ago... that wasn't the case. Now I know that all these pharma companies are making all these new findings in medication to slow-progression, but I just wish there was a little more attention on how to help us in our day to day side-effects of the damage that is already done.

That's enough of my rambling for right now, I will do an update after I talk to the neuro on Wednesday... fingers crossed?

xoxo
Ashley

Hello Reality...

I just got a slap of reality in my face recently... Let's catch you up to speed.

I went to see my neuro about increased spasticity on my whole right side. So I got the whole lab results down and a full MRI done last week... and I don't have any NEW lesions... and all of the lesions are still in my brain, so that's good news. I was relieved.

I had that feeling that the increased spasticity was from the increased heat here in Texas... the heat really  messes with my MS and I just despise summer now due to my MS.

So, I got a call from my neuro's office & turns out I'm JC Virus Positive... which they said I have probably been JCV positive this whole time and my previous blood was a "false-negative".

When my neuro first brought up Tysabri to me once we learned Avonex wasn't working my deciding factor was if I was JCV positive or negative. So being told I was negative, I was like alright let's do this. And I love being on Tysabri... no side effects from the medication... no NEW activity, etc.

Now I'm like okay... there has been posted that if you are JCV Positive and you're on Tysabri (or anything that suppresses the immune system) you have a 1 in 1000 chance of getting PML. So... My feeling is... I don't want to be on Tysabri anymore... because I would rather chance getting into a flare with my MS rather than even CHANCING get PML.

I have to think about not just myself... but my family. I have two little kids that depend on me and I have to do what's best for my family... and even taking a chance of getting something that cannot be fixed and has the potential of killing me... that's selfish and irresponsible for me to do, in my opinion.

I know there are many people who are JC positive and on Tysabri that's fine.. it's a personal decision. But I'm sitting here in my mind set thinking, okay... if I continue with Tysabri... I'm not going to be comfortable sitting in that chair getting the medication sitting there wondering, okay is this the treatment that is going to cause the PML..

I know there have been trials done about low risk for those that haven't had a lot of infusions... but thats a TRIAL... that's not a cold hard fact. I mean look at the luck I have...

I have arthritis... I get diagnosed with MS... during the spinal tap and MRIs being diagnosed I get told I also have degenerative disc disease and spinal stenosis. Look at my luck... if something can wrong, it goes wrong... I'm not a negative person when it comes to my medical concerns... I have a positive attitude about my MS and life in general, but I do reserve the right to be pissed off when I please.

That's the thing about MS... you never know what's going to happen. You can be doing fine for like a month and then one day, hello... pain and or numbness or both... with so many other possibilites.

So as of right now, I'm taking a "Tysabri Vacation" for the month of July, so I can continue to think about my decision... However, my decision at this point is to stop taking Tysabri and just wait for a medication to be approved by the FDA, which I'm really leaning towards BG-12!

That's all for now, will keep you posted as things change and or time passes by.

xoxo
Ashley
(stay cool, I know everyone is really experiencing some Texas Weather right now)

MS in the Limelight

Let me start off by saying, I'm not in anyway opposing MS getting noticed more by the media. But as we know... MS differs from person to person.

So when we have celebrities diagnosed with MS... for one... people need to keep in mind, they have enough money to get the certain doctors... maybe not even in the same country... and can have the modifications done to their house, get the best meds out there without having to fight insurance companies and so on and so forth.

This is why I feel that when MS does get in the "Limelight" that it's not really showing what MS really is and what it can really do.

In the news segments, they don't speak about that there are daily symptoms of MS... they just speak about the "episodes" aka exacerbations. They never speak about how there is no way to reverse the damage that has been done by these 'episodes'... they don't speak about the side effects of the medications that can TRY and slow the progression of MS...or the side effects of the medications for symptoms... none of that.

So while it's nice to see that MS is making headlines... I wish it was actually about the 'average' person with MS... not some one who has 10 billion dollars to do what they want with their medical care when it comes to their MS.

In any case, they talk about RRMS, they talk about remission like you are disease activity free like you're living life no even noticing your MS.

Then with the triggers, if you're like m and have heat intolerance ... You can't do a lot about that, I live in Central Texas an the highs this week are 100 and over. And I don't want to live my whole summer inside... But the cooling vest I have now... Does NOT work with this heat. It melts instantly!

There was a recent article about Jack Osbourne being diagnosed with MS... The headline was Sharon being quoted "I don't want my son to die."

I read that and was like ... Really? Ya MS can attribute to death but how common is that? Now they're talking about him doing a lot of supplements and exercising and a special diet. Great! But I've done the supplements some help some don't... I TRY and exercise but yet his only issue is his vision. If I work out I have to be careful cause I will pay for it the next day... And the only thing that I can really do that helps me is stretching and water exercise... I'm no stable enough to do workouts and my spasticity causes so much stiffness it's hard to do a lot, not to mention my right side is weaker than the left and that's my dominant size. And my foot doesn't pick up the way it should, so even walking isn't easy.

So my bottom line point is... If people want to know about MS... They should ask the everyday people about it... Because that's the REAL MS life... It's nothing against the famous people with MS... They are just able to have better resources for their MS. If where they live is too hot.. They probably have a house somewhere cool they can escape to.

Okay that's all from me. I'm actually at a softball tournament and tryin to stay cool.

Xoxo
Ashley

Been awhile... so here is an update

Yeah, sorry that I haven't posted in a while, that thing called life has gotten me really busy... along with a conference I went to for MS in San Diego... (CMSC) ... but I got to meet Clay Walker, which was amazing. 

So what's up with me... I'm just aggravated, to be completely honest with you. I try and be this upbeat person and a MS Advocate... I love sharing my knowledge with others and learning more and helping others with their MS.. but at this very moment... I'm pissed off at MS. 

So let's see... I got put on meds for migraines... basically I would go outside and the heat caused this huge unbearable migraine for me... to where I couldn't eat or sleep or anything. So I got meds for that... but it's still freaking hot! 

My spasticity is like 10 times worse than it normally is because of the heat... and I can't even seem to be outside. It sucks, cause I love being outdoors and doing things outside with the kids and stuff and my MS Spasticity is putting a really big stop on that. 

I feel like a vampire. I won't go anywhere, unless it's at night. Like today... I needed to run errands, but I decided not to even try until there is NO sunlight outside. Which is also a problem, cause I have issues with driving in the dark. So it's like a lose/lose situation. 

I was talking to my mom  yesterday on the phone and I kinda broke down a little bit, because I just can't handle the pain... I try and put on a smile and be there for my kids and do what I can... but as of right now, I'm lazy and I can't do anything. Even though it's cool inside the house, it's still hard for me to move around because my body knows the temp outside. 

I'm also looking for a new car, because for one my car is old... and isn't gonna last much longer... for two it has leather seats... for three... every time I stop, the AC stops blowing cold air. So I've been trying to search online for new cars... but I can't go looking unless my husband is here to take me because my hands will not let me drive during the day. 

I just feel like I'm going to go through this every freaking year living here in Texas. It's depressing, it's painful and it just all around sucks. So that's why I haven't been so active lately. I did however LOVE being in San Diego.. where the high was like 66.... yeah, was amazing. 

I have to go get my Tysabri tomorrow... and I'm gonna try and talk to my neuro while I'm there, because I just can't handle the pain anymore. I'm on Baclofen and Clonozepam for Spasticity... I can't even take hot showers... note, my showers are consisting of a shower chair with a hand held shower head, but that's getting hard to hold to bath myself. 

Sorry this is such a downer post, but I just wanted to let everyone know too that yeah, I try and have the most positive attitude while fighting MS, but sometimes it just pisses me off and makes me not able to do anything. Kinda like the MS is winning right now... The bad part is... it's not even our HOT MONTHS yet... seriously?!

I really need a get a way to see my best friend in Idaho... I just think the both of us NEED each other right now, and not just on the phone. 

A lot of people ask me if I use cooling products... yes, I do use cooling products... still have spasticity... what do you know. The heat also drains me... like I've wanted to sleep all day long and I have fought it... ALL DAY LONG. I don't even want to go run errands tonight, but I know that I need to. 

Well, I'll check in soon... hopefully!

Take care!