In a previous post I shared with y’all that my recent MRI results showed improvement and there were NO new lesions, which is great news! I felt so incredibly relieved with these wonderful results, but for some reason which I am sure is probably stress related, I still feel an incredible amount of pain and burning in my legs/feet. This pain and burning sensation is constant and unrelenting, which is nothing more than frustrating.
Trying to continue doing all that I want and need to do become trying because it seems like not much really help the issues I continue to struggle with. I feel that my body is trying to hold me as a prisoner from my own illness. Isn’t there normally parole from prison? Unfortunately parole has not been offered to me, so maybe that means I have not 
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.
Avoiding stress in the world we live in seems completely impossible to me, but maybe and not very likely I am wrong. I mean you are not able to turn the TV on without interruptions from the government, spewing nothing but lies! It is impossible to be out 
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!
Now considering my MRI results indicated improvement, I am left to wonder if the pain and burning sensation that will not let up is just my life. This is what makes me feel that I am nothing more than a prisoner in my own body. How do you break-free when nothing seems to help? All that seems to be happening is the walls are growing taller and more impossible to escape from.
Even though the issues I continue to face are frustrating, I will continue searching for the light I know is there somewhere. There must be an end to the pain and burning sensation and in time I am sure I will figure it out. However, by the time I figure out ways to end the pain and burning I am probably going to be very elderly and in an assistant living home, in which they will have to deal with me! I definitely feel bad for those individuals!
I would like to thank y’all for stopping by my site today. I always appreciate you reading my thoughts for the day and leaving your amazing comments! I hope y’all have had a nice day and I hope you are feeling well. Please remember that I will respond to all comments as quickly as I can, as I really do enjoy the open communication we have. As always I am sending y’all LOTS of love and comfort!
Always, Alyssa
lesions that were causing all my issues last year have healed as much as they are going to! My absolutely fabulous NP was so happy to see how much better my MRI was on Friday in comparison to how horrible it was last year! She told me and my husband how surprised she was to see how much I have managed to improve in just ten short months! She also said that it seems that Gilenya is just the right MS drug for me! I told her that I have NO intentions of changing 
medications again until there is a cure! I am not preaching that everyone should be on Gilenya because we all have different body chemistry. What works for me might have the adverse effect on someone else. 
This app is available for iPhone and Android under the play store, it is called ImageryWork. There is also a website if you are interested, 
think I should try eating 4-5 smalls meals each day, which I never do! I am going to try having small snacks throughout the day and not worrying about whether it is healthy or not and if I am going to gain a lot of weight! Weight has always been a huge worry of mine and I know how stupid that is in the big picture. Truthfully, I am NOWHERE near being overweight, in fact I am underweight according to the NP. 
health so I will actually feel normal, whatever that is! All of the support and encouraging comments I have received from y’all have been SO appreciated. Y’all helped me through a very difficult time, which I guess I kind of caused. I really am very relived that my MS is not progressing like I was thinking and that the Gilenya is doing it’s part for me!
and body. There is nothing at all I can do to change what the results of my MRI are, so why bother thinking about it anymore? If my MRI results are the same as they were in October, when the doctor said it was the “worst” MRI she had ever seen, so be it! I guess it is better to be the same instead of there being even more active lesions and I will handle it the best I can. I think I am a pretty strong person and can tolerate anything life throws my way.
myself 18 years ago, when I was diagnosed that I would never surrender to it and I would find a way to control the illness, not the other way around! I know this post is a lot different and lighter than some of my previous posts, but I am learning to just accept what I can not control or change and continue on with the life I was given!
I can be semi-logical sometimes because I do know there is nothing I can do to change what my MRI has found, but yet I still can not get my mind to slow down! Last night being SO stressed about this, I was able to contact a fellow blogger on Facebook. I thank Alex so much as she really did make me feel so much better, but now today I am back to being stressed to the MAX! Thanks to the blogging community and people as wonderful as Alex I know I have support and encouragement when I need it most! If you have not already visited Alex’s site, I am going to strongly recommend it. Alex offers so much support, love, compassion, and understanding, which I do think you will find as well once you visit her amazing site 
the one I have seen many time previously said to me, “Alyssa, do you have any questions before we get started?” Before I was even able to speak he said, “You know I can not tell you anything because this needs to be read by the Radiologist and I just do not have that type of knowledge. Now you also already know you can go online in a few days and read the full report.” I do tend to always ask at the end of the test if they saw anything like lesions. I hate waiting to see the doctor and I know the techs can see the images and probably have a somewhat educated guess on what they are looking at. My goodness they are so stubborn about sharing any news with me which I kind of think that is just mean, just kidding! He did make one funny remark by saying he was happy to announce that I do still have a brain!
Sunday. More than likely the reason for my pain is due to stressing about the MRI and also the argument I had with my mother on the way to the MRI. Isn’t it funny how when you are stressed about something all it takes is one comment to make the calm barriers fall down hard? The smallest of disagreements can turn into a disaster! I am not proud of this, but I am very strong in my nature and can have a hot temper when provoked. Anything I am really passionate about causes me to protect and defend it to the fullest. I will say things I mean, but it will come out in a very hostile manner. I do also believe that anything that happened yesterday is in the past and can not be changed, so all you can do is move on with life and hopefully be less hostile, but we will see about that!
will do my best to stay calm and definitely not continue thinking about “what” the results are going to tell me on Thursday. I think the only thing I can do between now and Thursday is keep my mind busy by thinking about only the positives aspects of life! Even though those positives can be hard to find because of all the negative in life are still there! Please remember that I am always sending y’all LOTS of love 
delighted that I after all this time waiting I can finally get my Cranial MRI and I will not have to pay a dime for it! I find it amazing that after living with MS for 18 very long years and having numerous MRI’s that cost a fortune, I was finally introduced to help! I know some of you do not live in the United States so this may not help you as much, but for those of you that do live in the states I am going to encourage you to visit MSAA’s website as they might be able to offer you some help 
causes my pain to be elevated tremendously, but the weekend so far has been dry and just terribly HOT!! Of course with the heat, I am just staying inside with the air conditioning as much as I possibly can! 
the company that might approve for me to get assistance with the co-pay for the extremely expensive MRI. The nurse, that is normally helpful, sent me the paperwork I needed to fill out and then send to the company MSAA, but apparently failed to send me the MRI order that the company requires. After several phone calls and emails they still have not sent this in or responded to me! The doctor is the one that wanted me to get the MRI, but I guess it was not all that important to her after-all! Maybe I am wrong, but I am taking this to mean my health is NOT all that important to her and neither is the MRI she was forcing on me. Through the fatigue and frustration, I emailed the AVP of the practice and SURPRISE still NO response!!!! I mean who else do you go to when even the AVP does not respond?
practice since my first doctor retired. My first MS Specialist was caring , compassionate and knew how to communicate, but I guess this is a new day in age and doctors like him are scarce. Communication between doctors, nurses and the patient is vital to good health care, but apparently they see things differently. Every time I see this doctor I go into her office prepared with all my questions written out, just so I do not forget anything and considering I know when I leave the office I will never get a response to my questions. I am not sure what happened to doctors that actually care about their patients, I think they are extinct like the dinosaurs! It is really sad that we pay all this money for a few moments of the doctor’s time, but sometimes feel like we are a nuisance to them? Or maybe that is just me.
love and comfort!
just isn’t working the way it should be! I am resting, staying hydrated and taking all the medications the doctor has prescribed, but there is still NO relief yet! My guess is the stress this issue is causing me is not helping me get better, but it is in fact making things so much worse! Isn’t it crazy when we know what is causing our problems to become worse, but yet we still change absolutely nothing with our thought process? Obviously I know exactly what is making all my pain more intense, but I am still getting myself worked up and upset about it anyways!
see what foods could be causing more issues for me). I want to also include a Hopes & Dreams page, Positive thinking page to really keep my mind in a happy place and a Gratitude page
. I might include a page of books that I want to read considering sometimes I think of a book I want to read, but then forget the title! Then lastly I want to include a page of ideas for my blog because I come up with random ideas, but then forget what I wanted to write about when I try to start! I guess I can contribute my forgetful mind to brain fog from the MS.
know I have done all I could do and hope they will approve my request for assistance. MRI’s even with insurance in the United States are insanely expensive. I still wonder why in the world I pay so much for my medical insurance just to have to turn around any pay tons of money for doctor’s appointments and required procedures, it just really does not seem right to me! Maybe someday the US will follow suit with the other developed countries and offer “free” health insurance. I kind of think it would be insane to hold my breath because things have been this way for many years without anyone stepping in to make GOOD changes! 
been back on the Gilenya for 6 months and they want to see if it is helping my illness. Until I mentioned that I was on Gilenya for 6 years previously they did not seem to have any idea and now it might not even be necessary. It is a little disturbing to me that my specialist did not know or remember that I was on Gilenya for so many years prior to October. When she first told me I needed to have the MRI, I thought it was to see if the new active lesions from the October MRI had went into remission or if there were new lesions, I did not know she was ordering this because of the 6 month time line due to restarting the Gilenya! If I am being 100% honest, the only reason I would want this MRI done is to see if there are new active lesions causing all this spasticity and pain. But all the MRI will do is cause me a lot of unnecessary stress and in turn upset me way too much, which we all know the damage being upset will cause. I mean seriously, if all is well with the MRI the specialist 
will say I am doing well with the Gilenya but, if there is any activity on the scan she might say the Gilenya is not strong enough for me and I need to consider starting a different medication. The bottom line is I am NOT switching medications again until there is a cure because the Gilenya worked SO well for me for 6 long years and if the MS has progressed to Secondary, Gilenya is still used to treat the illness. Do you think I am being logical or irrational with my thought process?
