Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone! I come on this site pretty often, but if you don't know, I've had MG for about 4 years, and mestinon was so amazing to take (despite the horrid side effects). I was fine until october then my symptoms came back and now mestinon is useless to me now, but we are looking into IVIG. I'm in the 10th grade, and had to miss SO many days due to being sick and appointments. We told the school what's going on and they understand what we go through. But my teachers are horrible! They fail me, they don't give me work and I'm constantly harassed by them for missing days. I don't like the way that I am treated, and I stayed home today cause I couldn't even get out of bed. I'm starting to look into homeschooling, since my symptoms are so bad and my mother hates the way we're being treated. I am failing 5 out of 7 classes and I just can't take public school. I could really use some advice and make sure that we make the right decision! Thank you in advance! :))
deleted_user
My son is hearing impaired and so has qualified to have someone coordinate his care and reasonable accommodations to be made at school. Certainly if you are in the US, you'd qualify for a caseworker who could take the administrative problems off of your plate. Is there a strong online program you could look at as well? I'm sorry you are struggling with problems on top of MG.
Barbel
We home schooled our children and loved it. There wasn't any medical issues, but that might be an option for you. The curriculum is very user friendly these days. Good luck to you. I think of you often and wonder how you are doing.
briannab83
Thank you both for some advice! This has been stressing me lately, so some wise words can help me get calm. I haven't been at school since thursday, and friday, I was at the hospital, and yesterday and today, I've been so weak, I can barely type this! But I have an appointment with my neuro next friday, so after that appointment, we will decide what to do. :)
carolela
Goood luck to you, you should not have to put up with that kind of treatment!!
mgot
I am a school Occupational therapist. You need to put in writing a request for an evaluation for services as an "OH" certification in special education. This stands for "Other Health Impairment". You may need the Dr to write your diagnosis on a prescription pad or their paper work. You will need to sign an Consent for Evaluation often called a REED. What you want is an IEP - individual education plan. You need this for either home schooling or maybe better yet a case manager will help with accommodations so you can be successful in school. With this in place things such as decreased work load , extended time for assignments or tests, etc can be obtained. Copies of books at home so you don't have to carry a set back and forth. All kinds of assistance can be made available. Another option would be a 405 plan. I would suggest an IEP. You can get a free advocate to assist you with this process. Some things vary in different states parts of the country, but the main items are under special Ed law. In my area even the MDA health care service coordinator could help with learning how to access these services. I have many gifted students who are college bound in my special Ed program. A fair number of kids with muscular dystrophy, friedrich ataxia, spinal muscle atrophy, all in general Ed classes and some honors program who get extensive help from the special end dept in these areas. One of the kids just scored a 36 on his ACT. Your requests must be in writing. By law law the have to meet time deadlines for assessments and meetings. Good luck to you. You have a lot of rights, shame on them for not putting you on the right track. I teach the students work simplfication and energy conservation techniques related to school environments as part of these types of programs. There is a lot they can do if you let yourself be labeled, services can be carried over to your college after you graduated also. Give you extend time on your college entrance exams......etc. good luck !
Join the Conversation