Remember in November.

(This is something most who suffer with MG have to debate with daily... Medication symptoms OR MG symptoms....)

Thinking back to when I was first diagnosed with Myasthenia Gravis in 2009, and all the ups and down in between, I am very happy how under control it is, at least for now...


MY MG: I am still getting IVIG treatment every 4 weeks and I am now down to 10mg daily of Prednisone, and have not taken Mestinon more than about 4 times since my last post! I have felt a little tired when I wake up in the mornings, but nothing too bad and after breakfast I feel ok. I also haven't taken naps as often! :) I am anxious to see my Neuro next week and see what she suggests I do next. 

Although I am very happy that I have lowered my medications significantly and am doing well, it is very scary to lower medications and make changes when one has MG. You never know if/when you will have a flare up, and/or when you will get symptoms again. But you never know if you don't try, all I can do is be hopeful that everything stays under control.

I went to see a primary care physician a few weeks ago to get some blood-work done that my Neuro requested. I was told that everything is ok for now, but that I should be cautious of my carb and sugar intake to prevent anything bad from arising. (That is one of the hardest things for me to try and reduce, I love sweets and pastries and rice and bread!!) 

** I was able to walk 3 miles at the MG Walk this year! I was so happy to have so many people there to support and walk with me and to help find a cure for MG. I literally was not expecting to have any more than 5 people but this is the outcome and I cannot express how grateful I am to have such amazingly supportive people in my life.


Update in Life: I am still loving my job, it is a great learning experience and my new title is a "Behavior Therapist". I have decided that I want to get my masters (or maybe doctorate, I haven't decided) as a Behavior Therapist, and Special Education Learning and Behavior, AND get my Directors license. You're never to old to make new dreams, right? :)

I am beyond excited to go back home to Illinois for a week in December and then have my 16 year old brother come and spend a week with me in Texas. I cannot wait to see my family and friends!

Update in weight loss goals: After the MG Walk I have not been able to go workout as much as I would like to, mainly because of my job and because I am a bit hesitant to go workout and afraid that I might get too tired to function the next day.

I am still doing some stretching and light workouts at home, but am hoping to get more active as soon as I get the OK from my Neuro. I am still trying to eat healthy but the changes in Prednisone make it hard to not get cravings! I have been trying to eat under 1500 calories, less carbs, less sugars, less meat, and still have not drank alcohol since the beginning of October!

I still don't think I have lost any actual weight but, like I mentioned before, my jeans have been a lot looser now and I can see my waist/curves a little more, I have also gotten questions/compliments about losing weight/looking better. :) 

I have definitely gained some more confidence, I have been wearing clothes that I haven't worn in a while and have some days when I get ready that I actually think "I think I look good today", I have not thought that in about three years.

3 weeks and counting (well, trying).

Update in Life: I know I said I would try and keep up with my blog regularly but I have been pretty busy lately trying to get my life more together. I have found a new career that is getting me a step closer to my "dream job". I am a lead teacher in a Early Childhood Special Education classroom at a private school that specializes in individuals with Autism. I love it! :)

Update with my MG: I have been getting IVIG treatment every 4 weeks as well as lowering my Prednisone 5 mg every 3-4 weeks  and have been feeling great! Currently I am taking 15 mg of Prednisone and have taken Mestinon maybe 3-5 times within the past two months! :) I have been feeling more active and been able to start doing some light exercises. I have an appointment with my Neuro at the end of November, I hope she is as proud as I am with how under control my MG has been!

Update in weight loss goals: I have been doing some light exercising for three weeks now, I started the week of October 7th doing some walking and stretching, the second week I did more walking and some days at a faster pace, and the third week I continued the walking and added some squats. I do not push myself too much but I try to push myself a little more each time. I am hoping that I will continue to feel well and keep exercising. I have not lost any actual weight (as in pounds) but I have noticed  that my jeans have been fitting better and that I am starting to see my waist/curves a little more defined.(and a few people have noticed also, which is always a great motivator!) :) 

Aside from the exercising that I have been doing, I have been trying to stay under 1500 calories daily as well as attempting to lower my carbs intake. I use the App "My Fitness Pal" to keep track of the calories and carbs, it's an awesome App and I highly recommend it! I have read in a few places that lower calorie intake is recommended for individuals on Prednisone and the lower carb intake is something that I am starting today (October 30) because my doctor recommended yesterday that I lower my carbs intake to try and prevent any other sickness/complication which can also develop due to Prednisone intake (like diabetes). I try to make healthier choices when eating, count all my calories, try not to eat red meat, and have not drank alcohol in 4 weeks! 

I have to admit, it is not easy, but it is something that I am trying very hard because I want to get my life back and be active and be able to go out dancing or rock climbing! I truly believe making all these minor changes is helping me get my MG under control and gain more confidence! 

MG Walk 2013: I am going to walk at the Houston MG Walk on Sunday November 3rd. I have a great little support group that is going with me and so happy to say that my mom is going to be able to be here from Illinois to walk next to me! Last year at the Walk in Illinois I was experiencing double vision, fatigue, and was only able to walk one mile. This year I am hoping that I can walk three miles (I think I can but I always have to be cautious because MG is unpredictable sometimes). I will post an update after the walk to let you know how far I was able to walk! :)

As of now, MG is only treatable, if you would like to make a donation to help support my team and help the MGFA  in finding a cure for Myasthenia Gravis please go to www.mgwalk.org/yme Thanks!

* "Be hopeful, but don't get you're hopes up."

* "Hope for the best, but prepare for the worst."

MG Walk 2013

www.mgwalk.org/yme

Dear Family & Friends,

        First, and foremost I would like to thank you all that supported me and my team last year, there are not enough thank-you's that I can express.

    `As many of you know, I was diagnosed with Myasthenia Gravis (MG) in 2009, my family and I have struggled daily with this frustrating auto-immune disease. I have gone through many doctors, medications, surgeries and treatments to try and repress this disease.

        MG is a chronic neuromuscular, autoimmune disorder that causes varying degrees of weakness involving the voluntary muscles of the body. MG can affect people of all races, sexes, and ages. MG may affect any voluntary muscle, but most commonly affects those that control eye movements, eyelids, chewing, swallowing, coughing, facial expressions, legs, arms and even muscles that control breathing. Presently, the cause of Myasthenia Gravis is unknown, and there is no cure.

     As you can imagine, my family and myself were heartbroken as I was diagnosed with MG, especially because I was so active throughout my life involving the muscles that weakened. For the past few years I felt so alone, until last year when I found a few MG support groups and came across the " MG Walk". I never knew that there were so many resources and support groups for MG and this just lifted my spirit so much!

I want to support and provide hope for the entire MG community, to try and assist in finding a cure and hope that one will be found within my lifetime. I decided to participate in walking to benefit the Myasthenia Gravis Foundation of America. I am asking for your support by sending in your tax-deductible donation today! It’s easy. You can support me online by visiting http://www.mgwalk.org/yme and contribute to my page or you can mail a check payable MGFA directly to me.

        MGFA is the only national volunteer health agency dedicated solely to the fight against myasthenia gravis and to serving patients with MG. MGFA has over 20 Chapters around the US serving patients & their families and caregivers through support groups and programs. Each chapter shares the MGFA vision of a world free of MG!

        Although this year I am in another state (Texas) I am excited to still be supporting the Myasthenia Gravis Foundation of America (MGFA) through the MG Walk. The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis. MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.

        I have had many up's and down's with my Myasthenia Gravis within the past few years, mostly down within the last year, but this year I can say that I am doing so much better and hope to walk longer than last! :) 

     Even though I am in another state than most of my loved ones you can still help support me and the MGFA! Please register to walk with me (if you can make it on Sunday, November 3rd at 9:00 am at Terry Hershey Park in Houston Texas and/OR make a pledge to help me reach my goal of $300!

Together We Can Make A Difference!

Sincerely,

Yesenia (Jenny) Estela

My MG

I guess I will start my post about my MG since I wasn't able to make it to work today due to my MG.

They say stress can trigger MG and I really believe mine was triggered by stress. Around the time that I started getting symptoms my grandfather passed away and I was there to witness it which was very devastating to me, it took me a couple years to get over it. I also was going through a recent breakup from my "high school sweet heart" whom I was together  with for 5 years prior, my family was losing their home and moving into an apartment, I was very homesick sine I was first generation college student and I was on academic probation due to my GPA. So you could say I was a bit stressed out!

I was diagnosed in 2009. My sophomore year in college. My symptoms started with my eyes, I couldn't close them all the way sometimes (I noticed it more while in the shower) and then my smile (sometimes I couldn't smile or pucker my lips). I didn't go to the doctor right away because I thought it was just lack of sleep and stress. Finally I was having trouble talking, chewing and swallowing. It felt as if my tongue was swollen and I could not talk at all. And to make it worse I was taking a speech class during that time, but luckily had a very understanding professor that let me do my speeches in private (the best that I could).

After seeing multiple doctors for about two weeks, (a primary care, an ENT and another specialist) I was finally refereed to a hospital because they were worried that my breathing could be affected, there is where I met my first neurologist that conducted multiple upon multiple tests which all pointed to Myasthenia Gravis. The most devastating part for me was not having this odd auto-immune disease that I have never heard of, but that I had to drop a semester of college to get treatment and surgery. I tried to do everything I could to not have to drop a semester but my family finally talked some sense into me and made me realize that if I am not well I will not do well in school.

I started Prednisone right away, (this horrible steroid that works but does horrific things to the body) then had four Plasmapheresis treatments (pretty much had my blood cleaned). After the plasmapheresis I felt like I could run a marathon, I felt great and was hoping I didn't have to have surgery but of course that was not the case! Due to the line from the plasmapheresis I developed a blood clot on the right side of my neck where the line was, so had to be on blood thinning injections for about three weeks (thankfully my mom and aunt are nurses!). On December 7, 2009 (the day after my birthday) I had a Thymectomy. Everything went very well, they said my thymus glad was very large and that we wouldn't know if the surgery worked until two years have passed.

Since the surgery I have been on this never ending roller coaster of getting better and worse and lowering and upping my medication dose. I started IVIg treatment in 2011 because my prednisone dose had to be upped due to getting symptoms of weakness in my face and hands again. I would get treatment every 4 weeks and eventually got to every 6 weeks. I went back to every 3 weeks in 2012 due to insurance thinking I wanted treatment in two locations and had me without treatment for two months (I just wanted treatment closer to my school, instead of driving 3 hours!). During those two months of no treatment I got worse, my legs got weak and I fell about three times. I started physical therapy for a few months to try and get more strength in my legs. I also have been told that due to the medications I am taking my hips and lower spine are starting to be affected.

I have tried multiple things to try and control this confusing disorder, I have tried different eating habits, exercise habits,  and sleeping habits but as soon as I feel better I end up getting worse. It is very frustrating.

Currently I have graduated from Illinois State University with a Bachelors in Science, Major in Psychology and Minor in Sociology in May 2013. It took me a year more but I have also struggled with a lot more than most, but I did it! I moved to Texas with my boyfriend (who is very supportive/understanding with helping me with my  MG and anything else I need, along with my very supportive/understanding family) and am currently a Pre-K teaching assistant.

The surgery did work, I have not had any symptoms involving chewing, swallowing or talking! But my new symptoms are my hands, legs, arms, facial features, and occasionally double vision.
I am doing IVIg every 4 weeks, taking 25mg of prednisone daily (reducing every 4 weeks), taking Mestinon and mestinon-timespan as needed and also taking a multivitamin, calcium, and vitamin D. I try to stay active but this Texas heat is too much for me right now! I also try to stay positive and not let things stress me out! I am currently working on trying to do a "clean eating" diet that I found on this great website eattobeatmyastheniagravis.com but I have tweaked it a little to personalize it for myself. I am starting with trying to not eat red meat and to eat just fruits and veggies when possible. I am hoping to be able to lose weight and lower prednisone, I have gained 40 lbs since I have had this diagnosis.

My goal for this blog is to inform and spread awareness of Myasthenia Gravis, to help others with MG, and to be able to control my MG and motivate others to find a way to control theirs. It took me almost 3 years to be able to actually "accept" that I have MG and be able to talk about it with others. I am not a professional writer but I do enjoy writing. I will try to post as often as I can. I love pictures and I love quotes, so I am sure you will see both on my blog regularly.

WHAT IN THE WORLD IS MYASTHENIA GRAVIS?

Myasthenia Gravis is a disorder in which the immune system mistakenly attacks chemical receptors in the body that help control voluntary muscle movements such as chewing, swallowing, walking and talking. This muscle weakness can make everyday living difficult. Like other autoimmune disorders, it can go into remission for long periods of time.There are many things that can cause symptoms of MG. Such as heat, stress, and lack of sleep.

Definition by Mayo Clinic staff:

Myasthenia gravis (my-us-THEE-nee-uh GRA-vis) (also refereed as MG) is characterized by weakness and rapid fatigue of any of the muscles under your voluntary control.

Myasthenia gravis is caused by a breakdown in the normal communication between nerves and muscles. 

There is no cure for myasthenia gravis, but treatment can help relieve signs and symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing. 

Though myasthenia gravis can affect people of any age, it's more common in women younger than 40 and in men older than 60.

For more information check out MG FAQ.  

In my next post I will discuss my MG from day one and where I am now.