I have always thought it was a little crazy and extremely frustrating that medications meant to slow the progression of illnesses down, are accompanied by a long list of possible side effects. I know that the Gilenya I take daily is supposed to slow the progression of my Multiple Sclerosis, but it has a really LONG list of potential side effects and at one point that was what pushed me to want to make a change in my treatment plan.
The middle of last year I was having so many issues with terrible sinus headaches and migraines that I wanted to find out what was causing them. After reviewing what side 
effects Gilenya posed, I saw somethings that were common was headaches and sinus troubles. I was not just looking the side effects up on Google, but I was on Gilenya’s actual website, so I took this very serious as I am sure most people would. I went to my doctor with these concerns and she pretty much dismissed my thoughts claiming that it was not all that common with this medication and that I shouldn’t be doing this kind of research because it was “false” information. I argued back asking how it could be false when it was on the manufactures real website!? Of course I was frustrated that my valid concerns regarding my health was being ignored and not even willing to discuss more at that 
time, so I decided to ignore her medical advice and demanded that I try a new medication immediately. It wasn’t until I told her there was another oral medication I read about that I thought would be better for me she finally decided it was worth her precious time to have a conversation with me. She tried her darndest to use the fear tactic, which of course wasn’t working well with me and only caused me to question her logic further. I know it sounds crazy, but I was completely convinced that she was receiving kick-backs from the drug company and me not changing medications would continue to be financially beneficial to her.
In preparation to change my treatment plan from Gilenya to Tecfidera I discontinued the Gilenya last July. I was required to be off medication completely for 6 weeks, so all the 
Gilenya I had taken needed be out of my system and allow the Tecfidera to be able get into my system. In early September I started on Tecfidera which again is an oral medication. During this time my MS did not get better, but much worse! I guess MAYBE the doctor was correct when she said Tecfidera wasn’t going to be strong enough for me or maybe I had the nasty relapse because of ALL the stress I was under. I was so worried about the headaches and the fact that Gilenya could have been the cause and then even more concerned that my MS was progressing way too soon in my life. Whatever the cause was the MRI I had in early October was HORRIBLE, landing me right back to the drug I was convinced was causing my headaches!
It still doesn’t seem fair to me that we have to make the decision if we would rather deal 
with the side effects of these so-called helpful drugs or be disabled. As difficult as it is to deal with the massive headaches/migraines, I would much rather deal with them rather than lose my normal abilities, like walking without assistance. I still do not think it is right for anyone to have to make a decision like this, but I guess it is what it is!
I have been back on the Gilenya for a little over a year now and I do still deal with sinus trouble and migraines, but at least the MS hasn’t to have progressed. I do think that until there is a cure for MS, which I must believe will happen in my lifetime, I will not be changing medications! Now that my husband and I have completed our move, I am 
searching for a new MS Specialist, who will hopefully be more knowledgeable and have much better bedside manner. I know I have already shared this with y’all, but I am NOT a fan of my previous specialist. As crazy as this may sound, I want a specialist that is an older gentlemen because I have found they are more understanding and considerate. Of course going with an older person, I run the risk of them retiring, like two of my previous specialist did and I absolutely LOVED
them! I am sure that with the determination I have, I will find one that is best for me and my personality. I guess it shouldn’t be as important to have the warm and fuzzy with a doctor as it is for the doctor to be knowledgeable, but I need to feel comfortable with them in order to trust the doctor.
I always appreciate you taking the time to stop by my site today and I always love reading your 
comments! I hope y’all are having a nice weekend and you are feeling as good as you possibly can! I must say having a long weekend is absolutely wonderful and I have been able to rest, but still do things that needed to be done! Please never forget that I am always sending y’all LOTS of love, comfort and many positive vibes!
Always, Alyssa
offer us. It isn’t worth losing the happiness our life can hold by dwelling on the struggles we face. It is difficult and yet possible to turn all the pain and hardships we wrestle with into something beneficial, I know how crazy that might sound but it is true. Some of the ways we battle through life can be very inspiring and encouraging for SO many others.
diagnosed, I would never be where I am today. Yes, life gets really complicated and frustrating, but overall I am in a very good place. My husband and I have moved to a new city, as y’all already know. We are living in a great home that is where my husband’s amazing grandparents raised their family. There is so much love 
nothing good will ever really happen in your life, which could just be because you aren’t able to see something great that is right in front of you or you aren’t allowing yourself to feel it. Staying negative all of the time just creates a dark cloud over your head that follows you everywhere you go and there is no way to hide from it. Negativity can create a blind spot to anything and anyone that could actually be wonderful.
between the good and the bad; we just need to acknowledge the differences and keeping moving forward!
seem like it, but I do believe that we can all accomplish ANYTHING we set our minds to!
I hate that I have been a little MIA for weeks now, but the life changes has been a struggle for me. I still need to find a MS Specialist near me, so when I do have issues, which hopefully I won’t, I will have a doctor to contact. It would be terrible to drive 2 hours back to the doctor I couldn’t care less for, but that might be my only choice for short-term, we will see. We did find a vet for our cats to go to that is really close to our house. Only one of our cats really needs a vet due to his asthma. A lady I work with said she has a great dentist, so I might need to check them out. It isn’t any fun starting all over again with doctors, but maybe it is actually a good thing and I will find better doctors that I mesh well with. I don’t think I am a difficult patient, but I need to feel like the doctor I see, no matter what type they are have required knowledge and the MS Specialist needs to be compassionate. Do you think I am asking too much and I am a little difficult? Of course I want the MS doctor to be honest, but not too harsh like my current one. All doctors should have good side manner, which seems to be hard to find!
It feels like it has been WAY too long since I have actually been able to write a post from the 
numerous meetings and tasks, but when he is in the office he is super kind and willing to answer any questions I might have. So far, my job has been very interesting! I have been learning about what my job entails and how to maintain a schedule for the VP of Finance. There is so much more to this job that I am very excited to learn. I am thrilled that I am going to be traveling with a co-worker for a week of training out of the state. This training will make me become a Certified Housing Counselor. I am looking forward to the chance to build relationships with the home buyers and feel that I will be able to offer a lot of compassion and understanding during a stressful time for them.
trial and error situation, but I am determined to make this happen! I know many people probably will never not fully understand this, but I find writing and blogging a great way to reduce any stress I am feeling. I think most of y’all already know that I battle with stress issues, but I am working to improve this. I think being a walking/talking stress case for 37 years is long enough and now it is time to change my ways. 
forward to getting back to a semi-schedule with my site.
especially when it seems to be never-ending. Being required to take numerous medications several times a day to slow any progression down, is not any fun! Making decisions of what the right medications are is like playing a game of Russian Roulette, you never know what the outcome is going to be. All of this takes determination to beat the odds and hopefully win the game of life!
Sclerosis 18 years ago, I have been on numerous different types of medications that are meant to slow the progression down. The first several were not right for me and I was able to move onto something different. The great thing is, none of the medications need to be permanent if they do not work well with your body chemistry, you are able to keep moving on with something else. This process was frustrating for me, but I never gave up hope that something would work well for me. Thankfully, I had a very understanding and tolerant doctor during this time which helped me make the best decisions!
Jenny’s posts!
showed good behavior! I know I do not listen well to my doctor (whom I do my best to avoid to at all costs), but I also continue to ignore the advice from the Nurse Practitioner (NP) that I actually like and respect, considering she worked closely with my first specialist that I just loved! During the MRI results reading with the NP, she encouraged me once again to try things to reduce my stress, considering she seems to believe that is where my pain is stemming from. I am do not agree with her completely on this, but maybe she is right.
among people without one them mentioning some lie they heard on the news that they of course believe. Avoiding stressors that I have been aware of for a long time is possible, but then through no fault of my own they seep through and then cause me nothing but frustrating feelings. I have even tried to ignore the stress-factors, but all that does is bottle up hostile feelings which tend to come out in rather terrible and unhealthy ways!
It is crazy to think that every struggle makes us stronger because some of us have been to hell and back again so many times that we lost count, but still we may feel weak at times. I know over the 18 years I have lived with Multiple Sclerosis, there have been days I have felt like I was being punished for who know what. However, even with every horrible situation I have been through with this illness, I have never allowed Multiple Sclerosis to ruin my life and defeat me ever!
illnesses are very unpredictable. This can mean that every day is different from another or even being a little more real, every hour of the day can different. This comes down to always being prepared for the unexpected and just keep moving forward without hesitation. This is not easy for anyone and yet that is what all of us do!
anyone that is part of your life deal with what you do daily? I without a doubt can so ABSOLUTELY NOT! I would gladly change places with anyone when I hear what their very minor complaints are! The truth is, we all handle our struggles differently and for those that have been lucky enough to have never had to endure what all of us do, they just do not understand and we can’t force them to comprehend!