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.