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.
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 is always the option of getting a port catheter for your treatments if you get plasmapharesis. There are pros and cons. I can tell you that you have to decide what will work for you. It all depends on your lifestyle and how your body responds to treatments.
Can be semi-permanent (can stay in for several months). However, the require maintenance by professionals or yourself. They cannot get wet and they need to be re-dressed and flushed weekly. So no swimming or showers… You will need to wrap in saran wrap and/or use a spray handle shower rod. I had to do this for months. The ports work a bit easier in treatments though when they are working properly though because they are a larger access point so the treatments go faster. It’s also a plus when you are tired and need to sleep or rest when tired. But a down side is if you are active and start to sweat you have to change the dressing more often and clean the wound site more often to prevent infection.
The port is also an eye sore and annoying because it can be seen ‘around’ some of your clothing. If you like to wear tank tops, boat neck tops, or anything off the shoulder forget it because you can see the bandages. You also have issues with the tubes slipping out of the bra area. I tried to wrap them in gauze and tuck them so they didn’t swing and annoy me when I had one. I also hated the port because when I exercised and did front lying things it was uncomfortable to the point of pain some days and I teach fitness classes so I was just too active for that thing. LOL.
Needle sticks are tough to deal with but if you can muster them it may do wonders for you. There are several down sides with this method as well too; however, this is the method that I prefer. You cannot move your arms in this method because you have 1 inch steel needles in your BOTH antecubital (front of the elbows) simultaneously like you are giving blood. Then you are have to squeeze a little stress ball the whole time which sucks if you are fatigued too much with your MG symptoms (no sleeping or resting there because the machine will cut off). The needle sticks can run almost as fast as when you have a port but it depends on the quality of your veins and your hydration levels. If you veins are bad the you should stick to port because otherwise a 90-120 minute port treatment could turn into a 3-6 hour needle stick. You and the nurses will dread your appointment. In addition, after your sessions you may have some bruising sometimes at the stick site. Just like when giving blood you get wrapped up and then in a few hour take the bandages off depending on if you are blood thinners and the gauges of your needles (i use 16 so I leave mine on for 3 hours) then put on band aids. That night I free myself of all wrap and band aids and I’m free to go and you can go on about regular hygienic care at any point in the day.
With both you will have scarring as with anything that cuts into the skin. So choose wisely if you have a choice. When you are in the hospital you may not always have much choice as they will give you what is best so they can get the best access and the least amount of resistance and give you the best rest. You may not want it but it will be what it best saying this leads into…
CENTRAL LINE PORTS
I have had several of these and they are like tunnel ports that I spoke of early but they are VERY temporary and go in the jugular and stick out of the same area. The different between that and the first one I spoke of is that the other is tunneled, goes in the jugular and sticks out of the chest about 2 inches under the clavicle. Everything I mentioned earlier is true of this model as well, except when you are discharged from the hospital they take this one out.
I have gained a healthy or rather UNHEALTHY phobia of neck surgeries, strangulation, and lying on my back AWAKE for surgery thanks to this particular procedure! I have several scars up the right side of my neck and anxiety galore from the mere mention of needing a port, central line, or neck related surgery. be warned though it is quick if you are in crisis or at a learning hospital it will do a number on you (I will just leave you with that thought). Since then I go to my preferred hospital and they give me anxiety meds and I at 30 years old take my stuffed animal that looks like my dog and endure. Laugh if you must because I do often but I do not care, it gets me through that trying moment when I wish I could black out at will, LOL.
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?
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.
- 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.
- 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.
- 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
- 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.
- Certain medications will require you to taper down on them or come off them completely during pregnancy; however, this is up to your doctor.
- 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.
- 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!
I want to share something from one of my fellow blogging MGers. There may a cure in the works, though it just that “in the works” and could be finally be the end of such a strange, rare, misunderstood, and hardly understood disorder. We can only Hope! In addition trials were supposed to begin last month in Europe according to curavac.com They also do research for other neurological/ autoimmune disorders and diseases such as multiple sclerosis and lupus. They sound pretty close on this even though it says 2018… That is pretty close considering how long it takes medicine to go through trials, FDA approvals and so forth and it has already cleared several hurdles. I will be talking with my doctors and experts on this matter myself!
192/365 -Vaccine for myasthenia?