There are many questions that Patients, Family and Friends, has ranging from Medications, How to live with MG, Tips and Tricks to Manage with MG.
These questions are directed to M.G. Patients, they are in no order!!!
Can I stop taking my Meds ? It is extremely dangerous to stop your medication, and to go cold turkey. Most of the Medication requires stepping down, if you stop your medication you will end up extremely sick. Can I die? No, Most people with MG leads normal lives if they stay on their medication, massive complications can arise from not taking medication which will lead to death, it is extremely advisable to stay on the medication. Can I be Cured? Unfortunately MG can not be cured YET, but with current medication it can be managed. Nero Surgeons? Nero Surgeons / Doctors, It is Important to discuss every effect, side effect and improvement with your Doctors, the smallest change can determine the amount of medication you receive or types of treatment. I feel dizzy There can be many reasons for you feeling dizzy, Most common is that you on a 50/50 score with your treatment, meaning you not getting worse, but you are not getting any better, your Nero Doctor might recommend alternative treatments. I feel Nauseas This is a tricky one, as even the small cold to a normal person can kick our already weakened system in the butt, there are three things that might cause nausea, Sickness you picked up from someone like the Flu, Reducing medication which will pass generally it takes a week after reduction, and a increase of medication, if the nausea does not pass speak to your doctor. Why am I out of breath? You must remember, that you have muscles controlling all functions of your body, the muscles that work the most is your respiratory muscles, they will get tired, if shortness of breath continues consult your Doctor ASAP, maybe to relieve shortness of breath you will be placed on a CPAP or BiPAP machine, which will assist in the breathing process, and give your lungs a break. Can I Stay Alone? We advise everyone not to stay alone, If your MG flair ups get worse you can go into a crises, which will make your entire body severely paralysed, Most MG Patients, has care takers to assist them. What is a crises? A crises is when your repertory muscles are so weak that they do not function normally, at this point extreme shortness of breath will occur, Medical Assistance is urgently required, as most Patients requires a ventilator to help them breath, Plan your routes to a emergency room, the faster you get there the better. I'm getting Fat Unfortunately you will get fat, this is because of Prednisone, there is nothing you can do about it except for healthy living, eating and food intake control. I'm depressed Depression in MG Patients is extremely common, remember that you will not be able to do things that you use to do, normally that hits, a MGer extremely hard , consult your doctor regarding depression, and join a MG group, people in the MG group has most probably gone down that road, and can emotionally support you. I struggle to keep my emotions in check Your emotions will be flown around like a tumble weed in a blizzard, this is due to Prednisone, it gives MG Patients a short fuse, and majority of the time, they do not mean what they say, take it with a pinch of salt. How many times do I need to see my Doctor? We suggest as many times as possible, state will ensure that you go at least once a month. Stress / Emotion? Stress is extremely bad for MG Patients, when you stress your muscles automatically works harder, FIND YOUR ZEN GARDEN BUBBLE. Heat? Please remember extreme temperature, is like our Hercules Heel, avoid at all cost, concentrate in staying in a well ventilated and temperature controlled room. What do I do after I have been diagnosed? Accept that you have MG, it is going to change how you do things, it will change your life prepair your life around MG, and NEVER GIVE UP. This is nonsense I can function normally, who cares If it was only so simple, acceptance is a key role in new MG Patients, do not underestimate MG at all, rather be prepared than unprepared. What medication should I be taking? Myasthenia Gravis is a Snowflake disease, so there is no standard prescription for MG Patients How will this effect my work? Most MG Patients around the world cannot function like a normal person and unfortunately becomes a liability to their employers, hopefully you have a job that does not require fiscal strength and repetition work, there is nothing wrong with your brain just your muscles, your noodle will still function normally. Shaving? Shaving is a repetitive function, you might need help to shave. Brushing Teeth? Using a normal tooth brush could be too much for your hand muscles try and invest in a battery operated tooth brush. Bending Down? Don't be silly bending down requires so many muscles it is insane, get yourself helping hands they work extremely well. Disability Sticker for your car? Myasthenia Gravis is a recognised divisibility, you are entitled to have a Disabled Parking permit, we advise getting one as that will reduce the amount of time you have to spend on your feet.
These questions are directed to Family Members, they are in no order!!!
How do we know they are really sick? This is the worse, MG Patients, can be fine the one minute, and then a flair up can happen, and it will be like living hell for them, respect them enough to listen when they say they feeling sick, unfortunately MG can not be fiscally seen. What do we do? When a Patient is diagnosed with MG, it is the worse thing that can happen, Imagen not been able to brush your own teeth, because your arm wont let you, they will be going though this stage on a regular basis, the best thing for you to do is to assist, them but not coddle them, remember they will be on prednisone, and depression or anger might kick in, accept it. Do they need assistance? All MG Patients requires assistance, from the smallest thing, like taking a cup to the kitchen to assistance when going to the bathroom. Ummmm..... Yes Ummmm.... its going to be hard for your family member to cope with MG, their whole lives changes considerably from the smallest things like bathroom activities to kitchen activities, Please we beg that all family members pull together and assist MG Patients it is not a nice disease, and Imagen yourself loosing function, they will need your help, but remember that emotions are heightened due to the drugs that is taken, and remember to take what they say in anger with a pinch of salt. Wheres more questions? send us a email and we will answer the questions you required answering
These questions are tips for been in an active household, they are in no order!!!
Kitchen Build your kitchen around you, we do not mean take a crowbar and start remodelling your kitchen, we mean, organise it to suit you, meaning a nice chair to sit on, place mugs glasses in normal reaching distance, take things that you use daily off the top shelf and place them on the counter. Lounge Make sure you always have a little table nearby you, if you need to put something down in a hurry because it is slipping, you do not want to still go around looking for the coffee table. Bathroom Slippery floors, are the worse, get anti slip mats, if you have a shower, SHOWER instead of bathing, No more lounging in the bath, the longer you are in hot water the more it aggravates your muscles, place helping bars in the shower, and a shower chair, place helping bars at the toilet. Some MG Patients, has problems of doing the most simplest things, in the bathroom, they can range from showering, shaving, brushing teeth and drying themselves, make sur eyour care taker or Family members is within screaming vanity to assist when needed. Bedroom Majority of MG Patients, cannot sleep laying down, most of them sleep upright, makes it easier to breath, arrange either a hospital bed for them, or LOTS of pillows Passage Keep passages clean, worse thing for a MG Patient is falling. Stairs Stairs are death avoid if possible, even if it requires you to walk around to the other side of your house. Garden Small bursts of gardening can be done, we advise getting a gardener, you can always sit on a chair, with a nice glass of cold water in your hand and delegate. Clutter Keep clutter and furniture to a minimum, the last thing you want is to be rescued from a pile of books. Disability Equipment We advise getting the Following, Walking Stick, Walker, Wheelchair and hospital bed.