ASK ME ANYTHING ABOUT MG

So I realized that there are quite a few people who follow my blog and whom I follow that have MG or some sort of autoimmune or muscular disorder. I wanted to take this chance before my surgery next month to give you all a chance to ask me anything about my symptoms, feelings, thoughts, or experiences with Myasthenia Gravis. It can be about the past, present or the future and I will answer it. I will keep your name anonymous if you wish it and you can send me an email or simply reply to blog with a question. I feel that sometimes this is the best way to help one another out in the community as well as just relate to one another.

 ellen degeneres ask questions ama ask me anything GIF

Better treatment could be on the horizon for Myasthenia Gravis and possibly other autoimmune drugs!

So I was going through my google updates and saw this nifty little posts. I am apparently a bit behind. This is definitely giving me hope as it is quite annoying to have your immune system even more compromised due to meds you take and to have to wait 1-2 years for them to kick in to see if they are even compatible/ effective for you. So I am praying for the better treatments!

Myasthenia Gravis (MG) is a debilitating and potentially deadly disease that can afflict anyone, characterized by severe muscle weakness, affecting control of facial expressions, arm and leg movements, chewing, swallowing, coughing and breathing. There is no cure, only treatment.

Source: Better treatment could be on the horizon for Myasthenia Gravis

What if’s of the Vaccine/ Cure

In lieu of the the trials of a vaccination of MG underway (though still in its infancy- still being tested on animals) a lot of what ifs have been playing through my head lately. AS with many medications, vaccinations, and drugs, there are always risk associated with them that if you wanted to take them you must agree to. Moreover, there is always the moment of does the benefit out weight the cost. For example, if you have an allergy to the drug, how bad is the allergic reaction if it is a possibility it can cure you?

These are the things that I have been contemplating as I have been awaiting news of trials in the U.S. I want to somewhat know what I believe my boundaries are before the vaccination/ cure is available.

My Weird Thoughts:

Before I begin I will say to you some of these things may sound weird but i do not care. I once asked my dad’s cousin if I was weird and he said yes. I was shocked. I was in high school and young and impressionable and a little hurt. Then he said the following to me:

Yes I am weird but weird people make the world go round…how many people say I want to grow up and stick my hand up someone’s rear all day…but a proctologist does just that. Though I am not a proctologist, I am not alone in the world of weird people, LOL.

If I had to give up a limb for a cure?– this is a hard decision to make as having a neuromuscular disorder forces us to feel as if there are times we have lost a limb, but we do not wish to feel this way. We want it back instantly, we do not take it for granted and would not trade it for the world. So to lose it for a vaccine I think If I had to choose I would say an arm but I would hope it would never come to that. That this would not be a side effect, or a cost, LOL!

If I had to give up one of my senses for a cure?– If I had to give up a sense I would say my sense of smell because it has at times gotten me in trouble. My sense of smell is very sensitive and has caused me to feel sick when others are fine due to horrible odors that over take me. Moreover, as it is tied to my sense of taste it has cause me to gag and ‘taste’ odors and the reverse is true and that makes for horrible moments if you eat something gross or smell something horrible. Dissecting cadavers in college was horrible for that reason alone. Anytime I smell the same scent no matter how good or bad if it is moderate or strong it will make me sick. Vomiting is even worse I continue to vomit due to the smell and the taste. And when you have MG the severe/ volatile repetitive muscle action is horrible for you in that area of the body and can cause choking. I have to eat a banana if I think I may vomit…it tastes the same coming up as it did going down to prevent that cycle…I know that sounded gross but it’s true.

If I had to give up the ability to have children/ sterility?– I am not sure if I could since I have dreamed if this since I was a child. I know I can adopt and this is an option only if I cannot naturally. But I think I would still opt for a cure and then adopt and if It’s God’s plan we may still be able to have a baby anyway.

If it caused me to gain weight? Sure would I would fine a way to get that weight off I am fit and active and I eat healthy, LOL

If it caused me to gain more disorders (mental, social, or emotional)? Well it depends on the severity of these mental disorders because I already have anxiety and if it can be managed with some blogging, and therapy here and there it may be worth it. The bills for MG are astronomical and the amount of drugs that go into your body versus the process of talking, blogging, and support from friends are just not worth it.

If it caused cancer? Well the drugs from MG have that risk as well so you just have to see how much of a percentage this carries with it and what types.

If it caused physical deformity not quite losing a limb but scarring, strange fat deposits, calcium deposits, weird skin conditions, etc…? Again some of the drugs with MG already carry this issue like prednisone so it’s about seeing how much more deformed you can be and if the risks are higher and if it more (worse) than what you currently deal with. Again not everyone reacts the same with any of these drugs.

If it caused eternal bad breath or body odor? Man I do not think I could do it for this. This is a deal breaker for me. I have a heightened sense of smell and I cannot deal with things that smell. bad. I also cannot explain my stench away to anyone no matter how medically induced it is. It would not be worth that for the rest of my life. I know that sounds petty but I to smell horrid for the rest of my life and no one come near you because of your smell is rough. I am very social and I enjoy hanging with people and that would torture me, LOL. I would not even be able to sit in a room alone from the stench, LOL. A total deal breaker.

From the wondering brain of a weird person, LMBO!

192/365 -Vaccine for myasthenia?

I want to share something from one of my fellow blogging MGers. There may a cure in the works, though it just that “in the works” and could be finally be the end of such a strange, rare, misunderstood, and hardly understood disorder. We can only Hope! In addition trials were supposed to begin last month in Europe according to curavac.com They also do research for other neurological/ autoimmune disorders and diseases such as multiple sclerosis and lupus. They sound pretty close on this even though it says 2018… That is pretty close considering how long it takes medicine to go through trials, FDA approvals and so forth and it has already cleared several hurdles. I will be talking with my doctors and experts on this matter myself!

192/365 -Vaccine for myasthenia?