About Myasthenia Gravis (MG)
So what is MG?
Read a condensed version here
I didn't have a clue prior to my diagnosis. But, because it is so rare, even many healthcare professionals don't know about it. So I have to be my own advocate, and therefore I've done a lot of research and talked with lots of people. I'll share with you some of what I've learned and then include links to some good sites if you want to read more yourself.
Myasthenia Gravis (MG for short) is a neuro-muscular, autoimmune disease. An autoimmune disease is something where your body is basically attacking itself. We all have an immune system to fight off the "bad stuff". In people with an autoimmune disease, your body mistakes "good stuff" for "bad stuff" and starts fighting itself. It's also neuro-muscular. In everyone's body, the nerve releases a chemical. This chemical travels to the muscle side of the junction and thus the muscle is able to move. My body is attacking that, and when my muscle doesn't receive enough of it, my muscle stops working.
MG can affect any or all voluntary muscles. This means arms, legs, trunk/core... but it also means chest muscles which affect your breathing, and neck/throat muscles which affect your swallowing and speech, and eye muscles which affect your vision, face muscles which affect your expressions/smile. It is called the Snowflake Disease, because like snowflakes, every MG patient is different. What works for one person might not work for another. Symptoms of one person may be completely different than symptoms of another. Some MG patients only get ocular MG thus it only affects the eyes (though it can turn into generalized). Mine is generalized MG, it affects everything. It typically hits women in their 20s-30s and men in their 60s-80s but can happen at any time including childhood. It has been known to sometimes run in families but doesn't have to and often times is not.
What makes MG worse or better?
There are 3 major things that make MG worse: exercise, heat and stress. But many things can make MG worse, some include: cold, medication, illness, aerosols/cleaners, insufficient sleep. Whereas in a lot of circumstances, the best thing is to push through it, pushing through it is the absolute worst thing someone with MG can do. Pushing through it will land that person in the hospital.
The best thing is rest, lots and lots of rest with lots of breaks and energy conservation, staying out of the sun/heat, not taking really hot showers, being extra cautious about medications, staying away from people who are sick, staying away from scents/fumes/sprays/etc, and avoiding stress as much as humanly possible. When there is not enough of "battery power" to make something work (in this case a muscle), pushing it isn't the answer. What do you do when your phone dies? You charge it. "Charging it" in the case of someone with MG means rest. Rest is an absolute necessity, before the point of feeling exhausted.
What about a cure or treatment options?
There is no cure. There are treatment options, however so far none of been very successful for me, and for many patients. There are serious side effects to just about all of them but the hope is that the benefits outweigh the side effects. Furthermore, though some websites will claim this disease is not progressive, the majority of us with MG have experienced that yes it certainly is. Here I'll go over some of the treatment available to MG patients.
- Mestinon: This is a medication pretty much used as the first option. What it does is send more of those "signals" to flood the muscle because the body stops so many of them from getting through. Basically this is what "makes the body work" to someone with MG. Everyone's dosage is different but typically it is taken about every 3-4 hours and it cannot be late or that person risks going into crisis.
- IVIG: This is basically multiple IV infusions of donor blood product. The point is to hope that others will have more of the "good stuff" to help improve your condition temporarily. Many people get these treatments on a regular basis, usually inpatient at least for the first one or two. Then some can even get it done at home. However, it comes with very horrible side effects for many including chemical meningitis. This also can be used in emergency situations to get someone out of crisis.
- Plasmapheresis: This requires a central line or port placed in the neck or chest. (Sometimes in rare cases it can be done through both arms.) You are hooked up to a machine that removes your blood, takes out the plasma and replaces it with donor or substitute plasma mixed with your blood cells and then put back in your body. Treatments typically happen every other day while inpatient, sometimes ICU, for anywhere from 3-7 treatments, 1-2 weeks on average. This is usually the treatment used in emergency situations to quickly get someone out of crisis. Again, serious side effects can happen, one major one being acquiring an infection through the line or bleeding/blood clots.
- Prednisone: This is a medication that is a steroid and immune suppressant, usually the first immune suppressant tried on MG patients. It works for a lot of patients but can have very serious side effects, especially if used long term. Some regular but very uncomfortable side effects many get from this are weight gain and very bad mood swings.
- Other immune suppressants such as Imuran or Cellcept: There are multiple other medications that suppress the immune system. The hope is to prevent the body from attacking itself. At the same time they all have very serious possible side effects and make patients extremely susceptible to any illnesses. Some even do Rituxan which has been considered a chemo drug.
- Thymectomy: This is a major surgery to remove the thymus, not thyroid, in the chest. The thymus has an important function when you are growing up, but as an adult is reduced to a very small size and does not hold a purpose. It is still being researched but found that some MG patients have some form of improvement after thymectomy. This improvement can be anywhere from very slight to full remission, but typically takes months to years after surgery to notice any improvement.
There are different ways to perform this surgery. One is making a full cut, opening the sternum, second option is a half cut of the sternum, third option is through the neck, fourth option is multiple incisions through one or two sides of the chest, and lastly is doing the forth option robotic. Recovery depends on the method used and the individual person. Time in the hospital is usually a couple days to a week (not including if any treatments are needed), and recovery back to being able to do what you were before surgery is anywhere from a few weeks to 3-6 months. Many patients undergo plasmapheresis prior to surgery to prepare their body to tolerate the surgery.
And so to conclude about MG...
So muscle weakness, no big deal right? Well it is. Your body just won't work. As much as you mentally want to do something, as much as you "look fine" as MG patients often hear, that neuromuscular junction will not work properly and they are not "fine". Medical professionals might consider it not fatal, but it very well can be if the muscle weakness hits the chest muscles. Unfortunately those in the MG community have known others who have died from MG or from a complication/treatment of/for MG. I myself was put into a life or death situation with the complication of a pulmonary embolism after thymectomy. Many however face this life or death situation from MG alone. Many MG patients at one point or more need to be put on a ventilator until the muscles can do the work on their own. It is also a major problem if when swallowing doesn't work, patients aspirate causing pneumonia. And once you have one autoimmune disease, you are much more likely to get more. It is highly recommended to MG patients to wear a medical alert bracelet and have your emergency card in your wallet. There may be a point you cannot move, or talk, or breathe and that will be a life saver.
In addition to my doctors, talking with other MG patients and self experience- the following sites have provided me with much knowledge of my disease. Please check these out:
Until this is updated, please read this POTS post and the following posts explain the process of my getting diagnosed, where there is also a link to read more.
Part 1
Part 2
Part 3
About Lyme Disease
Until this is updated, read more here and the following posts on lyme. It is an epidemic and a huge political controversy.
Part 1
Part 2
Part 3
Was this all triggered by your being infected with Bartonella and Lyme?
ReplyDeleteThe answer to that is uncertain. I was just dx with lyme and bart in Sept 2014. MG/POTS I've had since 2010. However, my LLMD believes the suspected lyme I had 10 years ago may have in fact been the trigger to all my chronic health conditions. Thanks for reading!
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