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.
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.
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.
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!
So I have been doing a lot of reading, researching, and connecting with people with MG and have found that what my doctor initially told me about MG is not the whole story! was originally told that it generally targets women in their 30 decade and men over 60. I was also told that it is not hereditary and there is no genetic predisposition that scientists know of. Moreover, there is nothing that I have done (or not done) that could have contributed to getting this disorder. In other words I wasn’t too active or sedentary or ate to badly or anything like that. Though I am quite healthy and active and was when diagnosed as well.
However, during my research, reading, and networking, I have found a lot of this to be contradictory. I thought at first maybe I was finding the exceptions to the rule, but then I was finding these people to be more the norm. I believe that there are a great many people that are simply not diagnosed, or not put into the system (like mayoclinic). Furthermore, I believe that many people are misdiagnosed because things like muscle weakness are a vague sign of so many disorders that doctors tend to jump to other issues before thinking of this disorder. It it the silent and little known disorder. It seems more reasonable to say M.S. which is well known, anemia, cerebral palsy, meningitis, and so on. Some are short term and curable, while others are chronic, long-term, and incurable.
During my searches I learned that many people I spoke with, there were people were diagnosed at ages well below that of what the doctor and the online sources quoted me. These people were 9-18 years of age. Moreover, on a rare occasion a few had more than one person in their families with the disorder which was amazing. I have only a grandmother with M.S. which was even amazing to my neurologist. They even found it more amazing that many of the women in my family suffer from severe migraines and take serious medication for them.
They say that the disorder is a 1 in 10,000 chance of obtaining it but it seems when I am online, in treatment, or other places that more and more people have it than that. I’m not sure if there is a proper census on MG right now. Maybe the more information on it and less stigma associated with it will help people come forward and help gain accurate numbers worldwide. I speak with many people worldwide on Dailystrength.com though I am not sure if they all enter in to the mayoclinic database or not I believe they are still entered into some national database. I Hope.
But we have to do better on the consistency on the MG information and what is being told to patients. The information is so basic that we are to believe that this is what is suppose to be right even when we are the abnormal cases in that situation. LIKE ME! They will still feed you the basic information which almost makes the doctor sound like a robot as if they do not know more about the disorder. It makes you feel uncomfortable as if you should run…
So sometimes your medications have side affects that state they will cause certain reactions like bruising or may cause issues when in the sun too long. However, you also find that some are just the strange reactions of that come with have a disorder that the doctors simply cannot explain. In my instance I was extremely healthy before the diagnosis and I am very healthy while dealing with disorder which makes it easier for the professionals when dealing with medical issues such as trying to figure out why may see a sudden change in heart rate, blood pressure, or respiratory issues since I have no health issues that affect that. My average heart rate is usually around 55, blood pressure 110/60, and I forget my respiratory rate. So when things are wrong they can usually find the issue immediately and fix it.
This next few things are a bit embarrassing and hard to talk about but maybe it will help a few of you that are going through this.
However, if something random happens they usually have to send me to several specialists or say they have no idea and say it may be a symptom that MG people get and to refer to my support groups because they may know more than the doctors. It is strange to hear that but surprisingly enough they do. I have had strange bouts of whole body skin flaking or skin peeling like a sun burn year round. It’s worse just after I shower and exfoliating makes it worse. I can put on loads of oils and lotion and halfway helps but it embarrassing. I find that sometimes every other day without a shower and using a sponging system on my extremities in between helps. I still wash-up but I use a spray handle from my shower or wash-up at the sink. This way my body’s natural oils can help my skin repair themselves. I also use astringent like seabreeze to cleanse my skin on tougher places like my arms and face that flake/peel more often. They peel so heavily it looks like a combination of dandruff and ash.
Some of the medications state they will cause hair loss or thinning; however, none of the ones I am on state it directly. My hair has completely changed texture in some ways. It gets dry way faster. I have to keep protective hair styles like braids and keeping my hair out of ponytails that stress the hair at the edges. Having long hair this is hard because when it is hot or your hair is in your face, your first instinct is to throw it in a ponytail; however, when you cut your hair you find that it sometimes be more maintenance than you like because you cannot just pull it back. You have to actually do it, LOL. When my hair is long and I don’t do it I can actually pull it back and keep moving or wet it and keep moving. But when it was short and I didn’t do it I looked like a chia pet and had to actually comb it and style it. Now that it is thinning I have to put special oils in it near the temples and edges, as well as wash it less frequently where I use to wash it daily. I also have to use special conditioners that cost way more but help control thirsty hair and leave in products that help give it life. I now live at sephora for my hair needs, LOL.
PREVIOUS ISSUES MAGNIFIED:
If you have preexisting issues, they will likely be magnified. I did not have many preexisting issues since I was very healthy but I had some minor things like geographic tongue. It never bother me before but now it has become symptomatic. Now when I eat spicy or sour food my tongue burns a bit. I had geographic tongue for years about 6-12 months before MG and then it has only started to bother me in the last 6 months. That full time span was 3 years so it has only bother me the last 6 months of 3 years. It’s annoying but not a big issue.
I also have an overactive bladder and when I am close to needing treatment watch out world because you will get RUN OVER, LOL. I am a steamroller on legs. I will run you over to get to the bathroom. When I was younger I needed medication but since then had gained control over this. Once diagnosed I found that this dwindles. The urgency due to fatigued muscles are not going to allow me to hold it in no matter how great my kegle exercises have prepared me from teaching Pilates. So where ever I go I now look for the restrooms. It only becomes urgent near my weakest times but it is still an annoying factor to deal with that people must deal with. I find myself sitting on the end of rows, near exits, and so on so I do not interrupt others in case I need to get out because I refuse to have an embarrassing moment.
Preparation BEFORE you go is key! while you are healthy make a plan for IF or when you go. This paper or electronic copy should have all your information on it. I have both. The reason for both is that I hand a copy to the EMS/ Admission person and I have an electronic copy on my phone for my family and myself to update and keep with me.
On it the following information can be found:
- My name
- My birthday
- My spouse’s name
- The name of my condition- and it’s likely biggest symptoms (which likely put me in there)
- My allergies
- What hospital I prefer– this is important because you may have insurance that works better with that hosptial or because they may have more experience with you or specialized care for you there.
- What medications I am currently taking- I list the strength and the frequency If I have time that day I may hand write in the last time I took it (they will ask)
- All my recent surgeries and procedures/ hospital stays-I promise if you wait until the day you need this it will take you forever to remember if you have had a few (which is annoying when you are in pain or crisis)
- List of my doctors with numbers and addresses
- Pharmacy number and address
Also try to always have a small overnight back always packed that has this list with small things you may want while there. For me in my overnight back is:
- a hairbrush and hair ties
- a phone charger
- laptop/ charger (that’s just me though- I play games and skype usually)
- change of clothes to go home in
- specialty meds the hospital may not have (mine does not have mestinon time release (180mg)
Also while you are in the hospital use the time to recover!!! Use the time to let them help you and ask questions. I am the worst for this always rushing to get back to work and life. If you do not ask for certain things they may not do it, when I say this I mean little things. I am always told I am the easiest patient because I rarely want nor need anything. I only want quiet and so they try to space out how often they come in. I also love how sweet thy are. I ask what I can do to make their day which apparently gives them a smile. Nurses have the hardest jobs. I always love how they commend and cheer you for the little things like passing gas, having regular bowel movements, and eating all your foods. My husband dies laughing and cheers too because he finds it hilarious I get cheers for this and they say well your wife does not get to leave until she can do these things regularly and though he still laughs he gets it. But it is our joke at home when I do it and he cheers, it makes me laugh so hard. You have to make light of these things. We do not see bad in everything and neither should you! You can find the rainbow in any situation. We find ours all the time.
It is important to know that when you have a condition, illness, disease, that knowledge and research is power. Ignorance is not bliss because it can get you killed. I wanted to put off going to the doctor when I started having symptoms for as long as I could but I knew that I could not because I did not like how I felt and I was scared. I had never felt what I had felt and with the ability to research at our fingertips there is no need not to at least begin the process there.
We have technology through all sorts of devices nowadays (tablets, phones, and laptops). If you have a problem you can put in your symptoms and get an idea of what may be wrong with you and then decide if you think you may need to go to the doctor. However, the internet can scare the heck out of you as well. The symptoms of a simple cold can come up as some rare case of some horrible incurable disease, LOL.
Sometimes though it can be quite valuable. When I put in my symptoms for my current disorder I was in disbelief. I put in a few of them and Myasthenia Gravis did come up but I was like no…I have no idea what that is, and at the time I did not have all the symptoms. Moreover, doctors (at least mine) ask me what do you think is going on what your body. They believe you are the expert of what is going on with your body and what you believe is the case. I said I have no idea. Plus honestly though I saw the word and again in his office saw the sign for MG I still had never saw that word before that day.
Once diagnosed it is great to learn as much as you can about it and then learn what will work for you and ask you doctor all the questions you can about it (over time).
- You will want to know about special diet restrictions
- Future implications for other doctor appointments like dental appointments (will you need antibiotics before going to see the dentist?, which ones can you take?)
- What medications should you stay away from? (with MG there is a huge list)
- What are exercise limitations?
- Are there research studies you may want to join?
- Learn about doctors with great ratings in your area that can handle your disorder (they typically will refer you to each other, so ask)
- Speak out against a doctor who may not seem knowledgeable about your disease, illness, or condition (this could be life or death) ask questions. There could be a new change that they are unaware or you are unaware and they can educate you. Either way double checking never hurts, I do this often and it makes you both feel good, my doctors actually appreciate it and then write it down for the future. They usually call write in front of me and that way we can all have confirmation and satisfaction.
So do your research and learn as much as you can!
So I get asked often about my disorder when I share that I have it. These are usually the days that I am symptomatic and I usually do not WANT to share because I am tired or struggling and cannot share easily because I am slurring or having issues breathing or swallowing but it is the best time for them to learn. I wish then that they would go to the websites I suggest but I know they will not so I share anyway despite how I feel.
- What is it?- Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body.
- Does it hurt/ do you have pain with it?- Not usually unless you have a comorbid (another disease or disorder with it) issue like arthritis, obesity, or diabetes. You are usually just fatigued mentally and physically.
- Will you ever get better? Is there a a cure?-It can get better with treatment but there is currently no cure
- How do you manage it?- With Immunosuppressants, steroids, and in my case plasmapharesis. Your life becomes these things and hopefully overtime you are able to taper done the doses of the amounts you take from when you were first diagnosed while staying stable.
- Can you still have children?- Yes, but you may not have as many and you are likely not going to get a natural birth as pushing is a muscularly fatiguing exercise which is dangerous for us myasthenics. Therefore we are limited for such a strenuous and highly repetitive endeavor and must have a c-section if we are cleared to conceive. Moreover, we are usually told to wait 2 years after diagnosis because of the increased risk of respiratory failure that can occur with myasthenics. I almost experienced this and was in denial of this ever happening to me and was glad that we did wait and not push the envelope.
- Is it contagious?- No, it deals with a defect of transmission of nerve impulses to the muscles. Therefore no issues with bacteria or viruses there for you to catch.
- Is it hereditary? Is it genetic- Myasthenia gravis is not directly inherited. Occasionally, the disease may occur in more than one member of the same family.
- Can you still have a normal life?- You can have as normal a life as can be expected when you follow your medication routine and work with your team of doctors. You can still exercise, eat a normal diet, and all have fun. I still enjoy everything I did before but with more rest breaks. But as we get older we tend to have to do that anyway right, LOL. The key is to plan those rest breaks and let people know when you need to rest and/ or if you do not feel well. Otherwise enjoy your life!
Additional questions can be answered at websites such as:
This video is perfect because it tells the story of how this can happen to anyone gives a short bit of insight into the life of a person with MG.
So there are times when you find that you are busy or you are enjoying yourself and you notice you start to feel very tired, fatigued, or all your symptoms start hitting you at once out of the blue after being controlled for a very long time. If you are stable and you cannot seem to figure this out it is highly likely that you missed a dose of your maintenance medication which for many of is mestinon (pyridostigmine).
I carry a pill caddy or pill organizer that is divided into days of the week and morning and night. Though there are ones that are more advanced that have more divisions in them. This suffices for me for now. However, there are days that I makes mistakes when I am tired. At the beginning of each week (Sundays) I sort all my pills into the caddy/ organizer for the week. However, when I get busy or I am out and about I tend to forget at times to check the time and forget to take my mestinon. Sometimes I even get as far as the next dose (a full 8 hours away, since I take it every 4 hours) before I realize I missed it. That’s when things start making since on why I was slurring or feeling weak or having trouble swallowing during a meal. If I have just had my plasmapheresis I may not notice at all if it happened within a week’s time of the treatment though I tend to be asymptomatic during this time since the treatments are so beneficial to me.
One big thing I noticed is that I try to take my mestinon as soon as I remember; however, the bottles says if it close to your next dose just take that dose. Well I will tell you this, in the hospital they gave me doses within 1 hour of each other. This made my symptoms go away very quickly and I there were no side effects or ‘overdose’ issues. I am not telling you to do this as I was in the hospital under doctor’s care. I am telling you to be careful, watch your dosage, try to take it the same time each day, and count your medication. Double check it often to ensure you took it to prevent issues. However, if you know that you, and/or your doctors have cleared you to do what my doctors have allowed me to do in extreme situations like that night for me in the hospital, then by all means do so. I would talk to you doctor first. If you find that you are forgetting to take your medication often I would also talk to your doctor, there may be another option.
Sometimes on my busiest days, or days that my schedule changes due a medical procedure, new medication, or job schedule changes, I set alarms on my cell phone/ calendar to remind me to take my pills throughout the day. Do what you must to ensure the healthiest you. We hope a cure is in the works soon to stop this madness but until then preserve your body to see that day!
So there does not seem to be a lot of information regarding exercise and MG. Every plan I see seems to treat MG patients as if they are invalids. Perhaps this is because of the small percentage of those who get the disorder are generally males and they are 50 or older. This means they probably are close to retirement and may not be as active. But in this day in age that is not an accurate assumption.
I work in the wellness industry and though I may be seeing a skewed view there are many healthy and active 50 years old that running, swimming, biking, skiing, and doing adventurous things. They are staying in the work force longer due to the economy and they are able to adapt to many conditions and injuries that were unheard of decades ago due to technology and medical advancements.
So then my question is why is it when I look up MG and exercise do they pretend that is nearly impossible. If it well controlled I am able to bike, teach my fitness classes (which is a combination of cardio and weight lifting, kickboxing, or pilates), and even jog. I understand that those who are unstable are a fall risk, but then this when they should be in physical therapy and finding a treatment plan (a combination of medication and therapy) that will work so that they can become stronger. Telling someone that they should do minimal exercise is ridiculous. Moreover, I understand telling people telling them to do what they think their body can handle is acceptable; however, when you are dealing with MG we are still learning what our bodies can handle and what the safe medium is. So with that note we are hoping that there are going to be professionals out there with more insight than WE have. We should not be the expert. We should be able to be the expert on how our bodies feel but not the expert on what to do with the body.
Granted I am the exception in terms of exercise because it is my profession; however, it is still out of my scope when it relates to MG and exercise, I still refer to the professionals here. I want a doctor who both specializes in MG and understands physical therapy but will not speak down to me as this my field. Is that too much to ask? I do not want to be a know it all, just a person who can stay fit, continue to get some gains, and help others who were/ are healthy and have MG find their way in this trying time. We as MGers are on a ton of medications that cause weight gain and the only way to help maintain or lose weight is to try and exercise and eat right. This also helps reduce your anxiety giving you an outlet. Exercise has been proven to reduce stress/.anxiety for up to 24 hours. I NEED this in my life. How about you?