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.

UPDATES WHOO HOO

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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.

Oh MG

MG warrior

So each time I go to the hospital now I feel like a celebrity. The nurses there are so sweet and I love them so much and they I feel like after 2 years there with them we have been through everything. I mean they have been through all my most personal moments that’s for sure.

But lately, when I have gone it has not necessarily been for any service of my own. I have gone to visit my Uncle or for quick lab work or something of that nature. And while I am there if it’s at the end of my work day I swing by the unit that does my plasmapharesis (plasma exchange treatments). Nearly each time I have gone they are excited to see me and ask where I have been because I have been one of their special cases and because it has been so long since I have been in that they almost worried that something had happened to me, lol. I told them that I working to only have to come in only 3-4 times a years as opposed to my usual 6-8 week intervals and they were shocked. Having just made 12 weeks they were even more shocked and excited.

Then they keep asking me to speak to every MG person that is currently in the room when I drop by. Each one asks me a million questions which I am happy to answer as long as they do not mind. I answer until I noticed they are too tired to answer. I may start giving out my card with my email so that they can continue to contact me afterwards with questions. So far each of them have said they have not had much luck with local MG groups in the area and have struggled getting help with answers to normal questions to struggles we have. Like tools we can use, services that are offered and normal side effects and issues we may encounter drug interactions. I told them I had to find a lot out on my own, that I had many of the same issues, and that I had not been diagnosed much longer than them, only 12-18 months longer (I’m just over 2 years) but that I was vigorous in my questioning, poured over research, and then found dailystrength.com and blogging as 2 great resources. Without them I was quite in the dark.

The information you learn online in your normal search is neatly packaged in a sterilized neatly defined bow and you have to learn to dig deeper. You have to learn to ask the right questions. And sometimes this is hard when you have just been diagnosed and are not sure what those questions should be. When I was first diagnosed my only question was could I still have a baby. I got mixed answers and it was not definitive, and then as I did more research and MG became more recognized in the last 2 years I found some doctors that had definitive answers but this was also linked to knowing what medications I was on, which at the time of I first asked my question, I was unsure which medication I was to be put on (cell cept, imuran, etc).

I feel proud to be able to give information about MG. Letting people know that you can go longer than you have before. I was once in their shoes unable to go more than a few days, then weeks without treatment. Now I can go months. You will learn how to push yourself to greater limits without harm.You will learn how to rest, and you will learn how to feel your symptoms and say I need rest but I can tough it out just a bit longer. My insurance is knowing I have a suction machine at home, and knowing if I need to I can crush my mestinon up and place it on my tongue on the roughest day and still get through on dehydrated days and refuel but I have not had to do this is over 6 months. I am learning where my breaking point is.

I still have anxiety once I begin to have a bit of difficulty swallowing and think that I may begin to choke but I think instantly I must calm myself and find my water and just breathe because obviously I am still doing that, lol. Or if I am struggling even more so, I must cough until my throat is cleared. Then I feel better and just relax. I do my best not focus on these tough spots but on the fact that they are fewer and farther between than the last time and that makes me feel amazing. My last one was 12/14/15 where I was choking in my sleep and only got an hour of sleep. However, I believe it was because I had hardly had much to eat or drink all day and then had something fairly acidic right before bed (causing passive reflux) and we already have mucus issues with MG. So I struggled all night. I kept waking up gasping for air as my airway kept getting blocked with mucus. It is so frightening. It hasn’t happened to me since well before August and I should have known better. Let’s just say I learned a hard lesson and along with that anxiety came a new found determination to be smarter.

I pray that from this post today, MGers all over learn that small steps can take you a long way and that you will not always be where you are now. Things can get better. They have even made advancements now that have been approved where there are new drugs that do not suppress the immune system to take in place of cell cept and imuran. I may be switched to these soon. I will let you know how that goes if this is the case. However, stay strong, know that if you have set back it is only temporary. Learn from it, use it, embrace it. We have MG but it does not have to run us.

12 Weeks are upon US

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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.

 

Myasthenia Gravis and Immunosuppressants Update

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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.

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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.

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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!

Rainbows but no Unicorns

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So yesterday I had the strange symptom of the rainbows again. I thought I had traced it to not eating properly during my workday. Maybe it also has to do with proper hydration too because yesterday I am positive I had eaten enough. I did however miss my water routine yesterday for the first time in weeks. I saw the rainbows around the lights around dinner time. I know this is also a symptom of being tired as well but as soon as I ate a bit and got a bit of water in me it went away 30 min or so later.

I have talked with my neurologist about this and he has not really had any thoughts about it yet besides checking my trough levels of cell cept and making sure it is doing its job since it takes 2 years to begin doing it’s full job. If it is not he wants to switch me to something else like imuran. We will see.

I wish with this symptom it was something better to report like rainbows accompanied with unicorns! Rainbows are usually a good sign, lol. It gives me a bit of anxiety because lately I have been having more ocular symptoms than anything else. In the past it was swallowing/ vocal issues. However, I don’t mind the change up as much, it just takes so getting use to as I depend on my sight so much and have to rest my eyes more now by taking cat naps or just sit in the dark.

I have to wear shades more often, even on cloudy days, and I have to come away from the computer and my books more often which I have yet to do. I need to create schedule breaks to do that! We will see how that goes, lol.