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.