Posted By Jackie

I’m doing a short video on what my first dose of Gilenya was like, so I’m not going to go into huge detail about it right now. That hopefully, will be posted in a few weeks. I know..the suspense is killing you. I will say this. Dr. Rossman is kind of a rockstar in my neuro book. Apparently Novartis doesn’t have any kind of protocol for what kind of monitoring they are supposed to do in this 6 hour window so it is up to the doctor what they want to do. Dr. Rossman hooked me up to an IV took vitals a lot, and scheduled 2 EKGs during the six hours. He’s no joke.

During the monitoring period everything was peachy. I had my internetz, my book, and I was totally content. I felt totally fine. I started to feel a little tired because it was early, I was sitting on my butt and Gilenya lowers your heart rate at the first dose (that’s why you’re monitored). I had my first EKG at 2 hours after dosing, and apparntly it came back a little weird, so they did another one an hour later. That one was fine, so they decided it must have been the leads on the machine acting up or something. So I wasted more time…then it was time for my next EKG at around 5 hours after dosing, and that one was off too. They decided it wasn’t bad leads, that something was actually happening. Apparently the QT intervals were off (google it, I guess). Apparently that means that my heart was beating SUPER slow, and it shouldn’t be that slow nor have lasted that long. So…what does this mean?

It means that I have to go back tomorrow for another EKG to see how it is going now 24hrs later. It also means that I have to wait to really start this drug. :( Dr. Rossman wants to contact my cardiologist and get all my records from when I had that heart surgery a few years ago (due to my UC meds). Since it is the holidays, that might take longer than expected…then after the new year, I’m having more surgery and anesthesia effects heart rate…SOOOOO it won’t be until late Jan until I really get to try again. Which means another 6 hour waiting period. AND even then, he/we might decide its not the right choice for me.

This stuff doesn’t surprise me anymore. It doesn’t even really upset me. Its just annoying. I am really happy that Dr. Rossman is taking such care with my case and my history. Its a nice change. I guess I’ve been off a drug for like 3 years now…whats another month?

Also if you’re considering Gilenya, don’t let me experience deter you. I’m a freak of health complications and what happened with me today has never happened in his office before. I don’t think this is super common, not to mention I felt physically fine during the monitoring period. Have a good chat with your doctor and be confident in your choice, but don’t be scared.

Posted by Jackie

Yes, I am talking about the same PTSD that soldiers experience. No, you don’t have to be shot at to experience PTSD. After many long talks with my friends who also have MS/jpouches/UC/other I have found that many of us are experiencing PTSD as it relates to chronic illnesses. Again…shocking NO ONE in the medical field has even mentioned it or bothered to semi-prepare me/us for it.  I have been doing some mild research on PTSD and chronic illness and it turns out..WE’RE NOT BAT SHIT CRAZY! It is a totally real thing…and yes…that is exactly what I have been dealing with. My PTSD is nothing like how they show it in the movies. I don’t wake up in cold sweats reliving battle scenes, but I have developed a very high level of anxiety. And even further beyond that, not just anxiety but a genuine fear of things going wrong. Anything going wrong. It started just in regards to my health again, before doctors appointments and such, but now its slowly creeping into my daily life. It feels like my chest gets heavy, my mind starts to race, I get very overwhelmed…and then I want to cry. There is a lot of fear involved about my medical state (even though its fine).

It is almost like when you’re in the midst of severe sickness, and you’re living it day to day, you don’t have a chance to really think about it or deal with it. Then once you’re in the clear, and leading a normal life again, when you think about where you’ve come from…its terrifying. I don’t want to live that again. That’s where the fear comes in. Day to day, I’m totally fine, but when certain topics pop up or if I’m really anticipating something, I can feel myself get super anxious. After much thought and consideration, I decided to get an anti-anxiety pill. I am now the proud owner of Xanax. Well not really yet, its still at the pharmacy, but I’m gonna go get it.

Anyway, the more that I discuss this with other chronic illness people, the more I realize many of us experience this. Some have it more severe, some don’t even identify with it. During my readings I’ve found a lot of great points and quotes that I want to share with you.

“Medical and surgical events appear sufficiently stressful to precipitate PTSD sequella or to exacerbate maladaptive coping among PTSD patients.  As noted above, a particular traumatic event is not always the cause of PTSD, but merely the precipitating trigger to preexistent co-morbid risks for the disorder. While not wishing to label everyone the “victim” of PTSD or to contribute to the “epidemic of stress”, it is becoming clear that the number of potentially traumatizing experiences individuals endure seem to be increasing in terms of manifesting symptomatology consistent with PTSD.”

This next quote was a big one for me. I always thought of my take down as a really positive experience and I was so happy when it finally came. However in the 3 or 4 months post take down, I’ve developed some serious fear. Fear that made me too afraid to call my surgeon just to ask questions…afraid of what the out come would be.

“Some medical events are known to be traumatic and at the same time are expected to have a positive outcome. Yet, the positivity of the expected outcome may not be sufficient to overcome the trauma of the procedures in organ transplantation, coronary artery bypass surgery and other invasive life preserving surgeries;…”

These quotes are from the article I have listed below. It is  one of the better articles I have found, but it is in a scholarly journal. If you have access to an academic library you can access it from your library. If you don’t…eh let me know…I might get it to you…in a totally not illegal way.

http://www.sciencedirect.com/science/article/pii/S0277953699003998

I’m not saying this is something to expect, or something you WILL experience, but more that it could happen. Its a real thing and your medical team might not even mention it. I do feel like I’m a guinea pig for you guys, because I always seem to experience the unexpected.

Posted by Jackie

I have had the worst track record with neurologists. I’m sure you all have had similar experiences, but lets just say its made this whole MS thing a bigger pain in the ass than it had to be. After my last neurologist left her place of work, for a place that I hate…I decided it was time to move on. This time instead of researching, doing interviews, looking for specialists….I left it to google. I called the closest one I could find.

I found Dr. Rossman in Farmington Hills, MI. I was pleasantly surprised. I got an appointment within 2 weeks I think, so there wasn’t a huge wait time. I was able to get a 8:00am appointment so there was no wait to see him, and I only sat in the room for about 5 minutes before he came in. ALL pluses in my book. Not to mention he was VERY nice. He hadn’t read my records before I got there, but he skimmed them. I didn’t expect anymore than that. You guys, this guy taught me more about MY MS in that hour than anyone every had. This might be a long entry because I’ve got a lot to tell you. I gave him my history with my surgeries and with Colitis, and he was sympathetic, not a robot. He even shared a personal story with me about how he’s persevered and kept on keepin’ on. I didn’t have my scans, but he said that he could tell some info from the records that were sent, but wouldn’t make any final comments or suggestions until he got the scans, WHICH he would go over with me. I have NEVER had a neuro offer to sit down with me and my MRIs and talk them over with me. Then he taught me about how the placement of lesions can show severity of symptoms current and future. He said I have new upper spinal lesions which were of major concern. Again, no one told me that the placement really mattered for much more than just symptoms of the attack.

Then we started discussing treatments. He ruled out all of the CRABs immediately. I asked if it was because of my history of sucking at taking them and he said no. He wants me to consider Tysabri or Gilenya. Which also made me happy. All of my neuros in the past would tell me certain drugs were something they would just not prescribe. Period. Not because they would be bad for me, but because drug companies had their hands in their wallets. This guy is very determined to help me fight the right drugs for ME regardless of what they are.

I am hesitant on Tysabri for many reasons. Obviously because of PML, but also because I don’t feel my MS is “bad enough”. Day to day, I am doing very well. No daily symptoms except for some minor cog fog, and over heating when I work out. Although, since my last relapse I have developed some ortho static hyper tension (dizziness when I bend down or stand up). Dr. Rossman said this could be from my last attack, but he needs the MRIs to know for sure. I did the blood test for the JC Virus, and we’re waiting on that to come back. He said if I am positive we won’t even consider it because of my UC history and other health complications. Hes really considering my other health conditions which is so great. No other doctors ever seem to consider one drug in relation to other health conditions. He thinks that once he knows the placement of my new lesions, he will know how aggressive he wants to treat my MS. I’m still nervous about it…but until we get the MRIs and the test results back there isn’t much to be nervous about.

Dr. Rossman told me his office would call me when they got my blood test results back, and it had been almost 2 weeks and I didn’t hear anything so I called and left a message. Shockingly, Dr. Rossman himself called me back. Not a nurse. He talked to me like he knew exactly who I was, he remembered my case, what we were waiting on…ect. He was so reassuring on the phone.

Not to mention that once I got there, I realized that Dr. Rossman has a whole MS center. They can do MRIs, and Infusions there. Pretty cool huh? So lets just say I’m hopeful. I think so far, hes a great doctor, who seems to really know a lot about the drugs and how they can affect MS and other health conditions. He’s had patients on Tysabri since 2002 (I think), and is well versed in how it works and stuff like that. He also conducted trials for Gilenya. Who knows what will happen…but again…I’m hopeful! I’m going back in a few weeks when my JC Virus tests are back, and my MRIs scans were transferred.

Posted by Jackie

After the last two year of battling Colitis and having surgeries, I am happy to say, I’m back. For real this time. And I actually have real shit about MS to say this time.  For the last two years my life was just consumed by being sick that I didn’t have time to think about MS. I didn’t have the time or energy to blog here to you guys. Instead I spend most of my time blogging on my Colitis blog, Blood, Poop, Tears. A long 2 year story short, I had my colon removed, I had a lot of surgery, and I had a lot of crap along the way. Literally and figuratively. Now that the whole shitting myself thing is over now, I can spend more time in my life and in internet land focusing on MS. I’ve got a lot to tell you guys, I feel like we’re old friend who haven’t had coffee in a really long time. So basically, what I’m saying is…I’m back and I’ve got so much crap to tell you!

 So infusion number two was an even easier experience than the first. I killed a couple of birds with one stone, got some reading done for school while I sat in the chair. I found out I did test positive for the JC antibody, but I’m not sweatin’ it.  

Here’s a list of awesome things I’ve noticed, or better yet haven’t noticed since going on Tysabri:  

Muscle spasms-Waaaaaay less frequent, I can’t emphasize this enough

Weakness in my neck-Yeah, it sounds stupid. Sometimes though it would feel like my head was bobbing around like Annette Funicello on Entertainment Tonight circa 1995. This was unpleasant, but is has pleasantly decreased. 

Energy levels-Way higher. I’ve been joining Jackie in the fight against fat. I can now walk more than five minutes (try 45 minutes, bam!) on the treadmill without losing any sensation in my legs or feet.This hasn’t happened in ages! This is huge for me.