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

Easter in November

I finally did it. I finally have a date for my thymectomy set in NOV.  In 2.5 months I will be doing something that nearly terrified me to hear when I was first diagnosed back in October 2013. I thought since I did not have a thymoma there was no need and that they should try all non-invasive methods first. I mean I had just been diagnosed for Pete’s sake. I had barely even been on any medication and had hardly felt informed enough to make an informed decision at that time.

Fast forward 2.5 years.

I barely heard more talk about a thymectomy until I brought up the subject of children. Then It was on the table again. I then had to wait what seemed like an immensely long time on a waiting list to see a specialist  neurologist in Myasthenia Gravis just to talk about how I could safely bare children with this disorder.

That wait took 8 months. August 2016.That’s when the thymectomy came back on the table.

I was all for it this time because I had been through nearly every treatment they had for MG now. They had told me what would and would not work for me over the last 3 years and what I was a candidate for and so forth. The doctors all knew me and has seen me countless times and knew, just as I did what my body could handle. My meds had been adjusted numerous times and after being on a cocktail that seem to keep me stable along with maintenance plasma exchange I still am only getting by.

The doctors believe that this surgery could definitely improve my quality of life and they have successfully performed it many times using the Davinci robot. I am both excited and nervous.

Having gone through a divorce recently I had already decided before that divorce that I still wanted children even if it was not with that man. I wanted them in the future even if I had to be artificially inseminated, ask a friend, find a new relationship, or even adopt. But my goal and hope was to try and have one of my own.

Going into this surgery, I am doing it completely for my own quality of life! However, we all need some additional positive things to hold on to going into life changing moments…Sometimes it’s the idea that a loved one/ family is waiting for you when you come out of the surgery, an event (like a wedding is coming up), or that you need them. Whatever the reason you hold on to those moments because it makes you feel safe, calmer, distracted, and gives you a reason to fight is somethings dare I say goes wrong.

I call those moments Easter eggs because they are the happy moments you plan or want to get back to in life. It’s like knowing on Thursday knowing you are going to your favorite restaurant with your best friend whom you haven’t seen in months due to your schedule for lunch. On Monday no matter how crappy the week you look forward to your little hidden gem because it may be buried under leads of stress, negativity, traffic, paperwork, bosses yelling, babies crying, missed flights, and marital spats, but that is a breath of fresh air in the midst of your week.

I am looking for a few Easter eggs right now for my surgery. I feel like I need more than one.

The Almost Cure: Nervous Excitement

So I got my results back from my single fiber EMG. Remember this is the test for MG patients that they put the needle in the muscle belly of the arms and forehead and give little electrical shocks to see how the muscle recovers essentially. Well Yes, it was just as I remembered. It hurt like all get out. I was not a happy camper but it was a necessary evil. Though I was given the option to tell the conductor to stop at any time I ignored that option as I wanted desperately to endure it so that he could get all the information he could. I figured if I did not tell him to stop over 2.5 years ago when I was in crisis mode I dang sure could deal with it now when I was much stronger. But when he lit up my forehead where there is not much muscle I swear I wanted to scream stop many times. I may be strong but I am not superwoman…I am not impervious to pain.

Anyways,

I get to the hospital after a 25 min trip took an hour. I go to check-in and they say my appointment is not at the hospital but at his clinic and I’m confused. I thought the place was one in the same. They politiely give me the address and say it is not far from there and it was only about 7 minutes away but in traffic took me 15. I called ahead and told them I was running late and that I had only EVER met this specialist at the hospital and had no idea he had a clinical office at another location and they understood and said they would wait as long as I got there before his 9am client. So I sped like a bat out of HELL. I got there at 8:35 and by the time they called me back and started my vitals I heard the call in his 9 am. So I figured I was good. NOT. They kept doing small tasks and having nurses come in and talk to me and some associate from a the muscle dystrophy association talk to me then another doctor but that all happened in the first hour. I then waited 2.5 more hours before I saw MY doctor. I was pretty annoyed by this time. I mean if it weren;t for the fact there are only 2 other specialists like him in the country and they are few and far between and I waited 9 months for this appointment, I would have left.

But I did not show any of this once he walked in, ONLY relief that he gave me his full time and effort, I am no fool. I need answers and his knowledge and I cannot afford to be ignorant something that is life changing for me.

The Results are in:

My arms have gotten considerably stronger in the last 2.5 years, but my forehead and eye areas weaker which from what I had already told him were consistent. Moreover, my hip flexors are strong but have gotten a bit weak but that was from a simple test from week to week not the single fiber test. I also have developed strider again (a respiratory issue). But what that means for me in terms of someone who wants to be more fit and has gained weight, wants to have a child, and wants to come off some if not all of my medications.

Right now he says the tests says my MG is too active. To have a child would mean potential death for me as well as if they took me off my medications right now. I am just not strong enough for any of that. I cannot go back to ‘normal’ yet. But he created 2 plans to help get me better so that I can have a child and be strong and come off the medications.

  1. First is to increase my cell cept from 1000 mg daily to 2000 because apparently for nearly 3 years I have been on a puny dose and it’s not enough.
  2. Then is to get a subcutaneous port. This is so I can receive my PLEX (plasma exchange treatments) easier because I will need to be plexed extensively over a 2 week period before getting step 3.
  3. Thymectomy- I will get worse before getting better for about 2-4 months (a bit weaker but I will be able to receive plex during this time as well)
  4. During all this time I will begin rituximab which will begin to replace cell cept and it is a med I can take even if/ when I get pregnant. But I need to be off cell cept 3-6 months before I am allowed to be pregnant.
  5. Get pregnant

The other process the doctor laid out had me doing the same process except based on my answers of wanting a child I would get pregnant first and then do the thymectomy further down the road (flipping steps 3 & 5 Basically. I said no prefer to do plan ‘a’ as he called it because it allows me a chance to be stronger first and to hold and care for my baby with less trouble.

 

I also learned something more about MG and pregnancy I never knew…If you have been pregnant before, even if you did not carry to term you are more likely to have more weakness and crisis at some point during the pregnancy and likely post-partum than first time pregnant women.

There is also the rule of thirds with pregnancy:

1/3 will have no change in symptoms/ weakness

1/3 will have increases symptoms/ weakness

1/3 will have decreased symptoms/ weakness

 

With the thymectomy I help cut this down greatly! So right now I definitely see no reason not to do this besides just being nervous about surgeries in general, and surgery from the standpoint of anesthesia and MG patients. I am definitely excited to have less symptoms that’s for sure and to be able to get treatments that are quicker and less painful. I am all for it. I can see why God has post-poned some things for me now. He had a plan that involved some serious flexibility not every place offers that or understands.

Secretly Answered…

download.jpg

So that poem earlier was totally what I had gone through and was feeling. I had to let go and take a leap of faith and let my pride go about how long I can go without treatment. I always want to be superwoman and make it 12 weeks and longer now that I know I can. However, there are sometimes extenuating circumstances and reasons beyond my control that I cannot foresee that say that I cannot and that I need to REST and allow myself to be rejuvenated and not worry about what could be. The problem I have is that I sometimes begin to worry about all the possible problems that can happen when I have to let go. Who will pick up the pieces if I have to let go.

I was worried I would be dropped by a particular specialist who has a waiting list a mile long to been seen regarding attempting to have a baby. For me this requires being taken of several medications and maybe being placed on others to compensate for them. It will also require being seen by other specialists along the way. I was so worried and I began to cry. I then decided no matter what I needed this treatment and just made the decision and placed it in God’s hands. I made no mention to anyone.

I called my neurologist as usual to set up my plasmapheresis treatment for tomorrow. He was able to get me in. I was happy. He called me back to confirm it then he said something I was not expecting but let me know that my prayers had been heard. He said by the way we have been meeting and have come up with some alternatives that may work for you regarding your medications and we need you to make an appointment with us after you have had your treatments so we can discuss this and get you moving.

I was in shock. I was so relieved to hear this information. It was satisfying to my soul. I thanked GOD. I never said anything to this man about this and for him to say that to me made my entire day! My only reason for seeing the specialist in the first place was not just for a baby which is very important but because I needed an alternative for the immunosuppressants and steroids that suppress my immune system which cause me to be more susceptible to illnesses. I am stable with my MG and tired of the EXTRA stresses of colds respiratory infections and viruses. It is just not fun when a normal cold is like having the flu and the flu is like absolute death for me. I am durn proud to have gone so long without a hospital admittance and (knock on wood) keep it that way. I have gone a year without an MG related admittance and 9 months without any overnight admittance period.

I am still learning but I know I can do the things that I am set to do through God and I believe this wholeheartedly. If I pray for them and get them I must be ready to accept them and all the blessings/ consequences. I am learning things can be hard and hard work at that but if I want it to be great it takes that sometimes! I have to learn to listen too and not to the human self but the spiritual self and to God. That is hard if you do not have a relationship with him and I am working hard to keep that line open and clear!

download (1).jpg

UPDATES WHOO HOO

images.png

So these were the updates I was waiting on! Though we have a long road ahead of us. I was just glad to hear some good news. I gives me new goals and another reason to come off this recent SALT rush. I have been hitting salted snacks pretty hard lately which is not like me.

So I gave up all nightshade foods about 2 years ago and around 3rd quarter of last year I noticed that after accidentally have a few of these foods it did not affect me and that I may be able to add a few back so I did somewhat slowly then altogether. I have been eating them pretty freely since then and now. I I have noticed that I do not feel like I did before. I do not feel as if my MG is flared by any means but health wise I feel icky. so I think I will at least back off some. I think as usual everything is okay in moderation but I went overboard and somewhat incidentally because I had not had my favorites snacks and food out of necessity cold turkey in over 2 years.

The new is that we have to see several specials to begin the process to have a baby but we can start the prenatal vitamins which we have to have in my system for at least 3 months before trying to conceive. The doctor said the specialist could say everything is fine and you can come off everything in 2 weeks time but if we have not started the vitamins now then we are are prolonged. So though I doubt the specialist will say this we can at least begin the vitamins. I hope I find some tasty gummy ones because I am not a fan of ‘horse’ size pills I have enough big pills I take everyday. We will see though.

Of the specialists to see I am seeing a man who has help write a book on MG Dr. James Howard whom they call shifu, lol. He will see about changing me from cell cept to something that does not suppress the immune system and cause birth defects or possibly taking me off altogether for pregnancy. I have met him before.

I also am going to see a neuro OBGYN (though I have a OBGYN). He will make sure that both my Mg is adhered to but also what I can be on for my migraines during my pregnancy and pain management for that. I am currently on a high dosage migraine preventer daily and this must be discussed.

Lastly, I am to see an ophthalmologist. I have some unbalanced pressure in my eyes and though they think it may be something minimal they want to be sure. I have never had diabetes any other condition with MG I am really healthy so they just need to make sure my eyes are not showing more strain due to my MG.

So if I even got a green light to immediately from all these doctors, which would be a big if, the earliest would could start would be April. However, I as keen as I am do this as soon as possible while body is still young and strong for an MGer I still have things to sort out personally. I will keep you guys updated! I know there are many young MGers out there who wish to have children who are following this and want to know how this works. I also want to remind them that each person is different just as with regular people and pregnancies but I will chronicle things as much as possible.

12 Weeks are upon US

images.jpg

So here it is…12 weeks! I have been blogging about it for months. Some of you noobs are like what are you talking about? I had to go 12 weeks without plasma exchange treatment to even be considered as ready to TRY to have a baby as I have a condition known as Myasthenia Gravis. For the last 2 years I have been on a roller coaster of emotions, doctor’s appointments, and thoughts!

I have been through it all. The if this guy would have had his act together I would have been where I want sooner (but then would I be happy). Who wants the drama of divorce or children with another man and trying date. I’m not saying this is a bad thing, I’m just saying it is not easy. I would probably be one of those women who put their whole life on pause for my child and forget about my happiness and makes excuses about it because that is how I am. I am overly driven but would give it all up for my child(ren).

So now that the 12 week mark is here. I have a million and one doctors appointments, lol. I went from having 1-3 doctor appointments per week in the past to none in several months which has been very freeing. But now I have 4 this week and then treatment (plasmapheresis aka plasma exchange). They are running a full battery of blood tests and deciding how and what meds to tapper first. Then They want to see if I should continue to cell cept to switch to another immunosuppresant. I figure if they do lets switch to a newer one that does not have the side effect of suppressing the immune system. I am glad for this new advancement. Getting sick is NOT the business as my friends say, lol. (It’s not fun). I am just glad to be stronger.

In other news the other doctor appointment I have is a follow-up because the fluid pill they put me on to reduce the edema they believed I had that caused an 8-11 pound weight gain in 10 days is still here. I think I have gained 2-3 more pounds but I am not sure. However, it is safe to say that medication has not worked. So we will have to figure out another solution. I would prefer not to increase to amount of the fluid pill because when I first take the pill in the morning I go to the bathroom LITERALLY every 10 minutes for about 2 hours then after that every 30-40 minutes for about 2 hours then I go at my normal rate. But either way I do not really notice much difference in my hands, legs, feet during this time. My hands reduce just a bit but not much and before long they are back to normal. I think it’s inflammation but I am not a doctor.

I also asked for a treatment because I though I made it to 12 weeks and could passively go a bit longer, if I do not have to and we are not able to start for the baby right away I will not force my body to go through that right now until I come off the cell cept. I cannot try for the baby until I am off this so until then I will get treatments until they say otherwise. I will still try to train my body to go longer than 8 weeks though so it does not rely 6-8 week treatments but prefer not to feel super tired, drained, and have so many symptoms if I do not have to. Cell cept causes birth defects so I know there is no trying for a baby as long as we are on this…we even had to sign a form before I was put on this acknowledging that I understood the risks of the medication for possible birth defects and that we would use proper birth control. The form even spelled those out and how many forms to use if you didn’t use the specific types the manufacturer/ professionals preferred they wanted you to combine certain types.

So though I have three 4 day weeks coming up, they will be filled with refilling my body’s reserve tanks, but draining my emotional energy reserves and probably a bit more of my sanity, as if I have much of that left, lol.

 

Halfway Point

download

So we have made it to this point before and I will say though I feel puny, I have faith that after next week I will feel better again. I am now 6 week without treatment. However, each time I get to the week before and the week of my menstrual cycle my MG flares up like no one’s business and I almost break down and want treatment. But I know right now I am fighting for my chance to prove I am strong enough to make 12 weeks without treatment. If I can get even 10 weeks. I know that I can make it and that means that we can begin a tapering of medication and working towards to trying to have a baby. Though we may only be able to have 1 naturally I will try at least once. If I have to adopt the rest so be it. I don’t mind doing that since I have so much love to give and there are so many children that need a good home.

If we cannot have one naturally, then at least we tried and I will still try to adopt because again too many children need a good home. We got this!

Myasthenia Gravis and Immunosuppressants Update

Types of Immunosuppressants table_Layout 1

I am excited to know that there truly are new medications that have replaced the old ones out there. I first saw it on a fellow bloggers page Laurna talks about it. My neurologist told me last Thursday that he was going to a convention where he was meeting with some of the top experts from across the country to talk about MG mainly among some other things. Of course he asked me if I had any questions and I said my usually regarding tapering off things to prepare for trying to conceive and eventually trying to come away from some medications but also asked do I need to be on some medications? I do no like the immunosuppressants because they do just that, suppress your immune system and each time cold/flu season comes; you are susceptible.

images

He said that if my cell cept was not working that he wanted to keep me on it until further research was done. I just hate the colds because once you are sick it obviously exacerbates other symptoms. Our biggest thing is to know that we can go 12 weeks without plasmapheresis right now. I currently get this every 6-8 weeks and to be able to push it out that far or longer would almost definitely mean we are ready for a baby. I have to be able to go 12 weeks without plasma exchange. Plasma exchange in the first trimester is equivalent to aborting the baby, it is safer if needed in the second and third trimester though you want to be able to go as long as possible without needing it.

images (1)

I would also like to be tapered off as many of my medications as possible during pregnancy. This would give me piece of mind for my baby’s safety regardless of any statistics they throw my way, lol. But of course I will trust whatever, my neurologists and his leading expert Dr. Howard says as they have been covering my case from day 1 and have not steered me wrong so far. Any setbacks I have had have been due to outside people who have had no idea what they were doing and not consulting with them. Boy am I excited and anxious to hear what he has to say after coming back from that conference!

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!

Pregnancy and MG

Pregnancy

So there is not a lot of information on pregnancy and Myasthenia and many doctors almost try to talk you out of it. I have had had one doctor that was so rude she even went as far as to say, “why would you want to have kids?” Needless to say I reported her. It is a very sore spot for me as I was diagnosed wit Mg 2 weeks before my wedding and have always wanted children. So when I was told that it may not be possible and then that I may have to wait 2 years or that it could kill me and so on, I was very confused and upset. I am constantly asked when I say that my symptoms are exacerbated around my menstrual cycle they ask if I want MORE kids (insinuating a procedure to end them and help reduce my issues). I’m always like MORE kids…I don’t even have one yet lets be a bit more sensitive please and at least ask if I have any first. Doctors are so desensitized nowadays.

After doing a lot of research and speaking with many doctors I found that people with MG can and do have babies. There are several concerns to deal with though.

  1. What medication you are on: cell cept for instance causes severe birth defects and you even have to sign a  waiver stating you will use several types of birth control while on it and not try to get pregnant while on it. Other medications come with similar warnings.
  2. Plasmapheresis: You have to be able to go 1 trimester without this treatment as it can act like an ‘abortion’ in the first trimester . You want to go as long as possible without this treatment but if you need it in the 2nd and 3rd trimester it is possible.
  3. If you are just diagnosed with MG you want to wait to try to conceive for at least 2 years b/c of respiratory failure
  4. You are not likely going to get to have a natural birth if you wanted one because it is too stressful on the body and the repetitive fatiguing issue of the muscles pushing so we must have a c-section.
  5. Certain medications will require you to taper down on them or come off them completely during pregnancy; however, this is up to your doctor.
  6. Another this is that the baby could have MG for a short period while in the womb and have little movement which is likely to wear of they say shortly after birth. Moreover, some are also born with MG and have it for about 2 months and this is also likely to wear of about 2 months after birth.
  7. We MGers are also likely to be more fatigued during pregnancy than normal pregnant people and our symptoms may be exacerbated; however, some people have said that their MG seems to “go away’ while pregnant, everyone is different so, I’m hoping to be the latter.

I still have plans to have a baby and we are getting closer each day. We have had some obstacles adjusting medications and with some crisis issues but we are finally getting to some stability and all my doctors are starting to finally focus on it. It feels like a breath of fresh air. Even if we find that we cannot physically have one…if it becomes to demanding on my body, we will adopt. We have too much love to give!