Thanks angelgarden. Sorry I was unable to respond to your comments on thyroid, morning sickness etc, it's been a little overwhelming here. I'm so glad that you managed to eventually get to the bottom of your own health issues and hope you are feeling alot better now. I had a friend diagnosed with Grave's, and a cousin with thryroid issues. I researched that for them upon request and it became another for the blog. I'm sorry that you too suffered from hyperemesis - no-one told me what/why this was happening to me, I felt like death itself, in fact, I didn't expect that I or my child would live. I was unable to speak throughout as it was so severe(could not even keep water down). I had to learn for myself that this 'extreme form of morning sickness' had a name and that others have aborted(something I would never have considered). I included an article and some links for that too under the "Women's" section on my blog. I hope you are enjoying your children and life is much kinder to you now, having gone through such a thing. My heart truly goes out to you.
My blog link is: http://www.aspie-editorial.com/http://www.aspie-editorial.com/
Re the Myasthenia and what to look out for as parents: The most notable symptom was extreme fatigue, as a teen. Nothing prior in my daughter's case, but there was a 7 year old boy with it, who sadly died. He did not respond to treatment. My daughter would sleep after I'd drive her home from secondary school, in the afternoons. Having been an AS teen myself, I was very much the opposite - I had and still have an abundance of energy, was into gymnastics, swimming, long distance runnning, sailing and more. Dealing with people did and does create a need to recharge the batteries, but not to the extent, she was experiencing. It never affected her schoolwork as she was very hardworking and a high achiever. Doctors never took her fatigue seriously though. Her boyfriend, a very athletic aspie, would take her out jogging and to martial arts, and she'd be overly exhausted afterward. She has always eaten well, never been overweight, nor underweight until her weight started to drop with the stress of the job, and what we now know was the MG, laying dormant. She has always been tall and slim(about to change with the steroids from what I understand). I'd ensure she had homemade milkshakes in an effort to boost her weight each afternoon and her nutrition was very good.
Stress, anxiety and/or physical exertion is the thing that brings about 'myasthenic crisis' in someone with MG where it may be laying dormant or 'in remission', which causes breathing difficulty and the very real possibility of needing mechanical respiration. You have to listen to your body and learn your limit. I believe it was the stress of having to confront a male staff member on more than one occasion of their seriously inappropriate treatment of several autistic children which brought it all to the fore. It would have reared its head at some point, sooner or later. She was exemplary in dealing with and educating this particular member of staff, but the effects were catastrophic - she began having panic attacks at the end of the school day, as well as severe headaches, difficulty with sleep.
So many of her symptoms could so easily be attributed to natural autistic/AS reaction to stressful situations. Her outlook though, has always been the same as mine - very positive, glass half full type of outlook.
Personality-wise, she was and is a dream daughter. She's never given us a day's worry. Very sweet, gifted musically, great with languages, has a degree in psychology and is very talented artistically. She was never into sports, had difficulty with swimming lessons both in and outside of school - she would admit to being of a more clumsy physical nature.
Until more specific and worrying symptoms develop, there is little a doctor will do for a fatigued teen, other than the usual blood tests, which for us were of no help. I had to take her to more than one doctor to express my serious concern recently, and to be an undiagnosed myasthenic is very dangerous. It can mean the difference between life and death.
The symptoms of MG can come upon you very quickly and can go into remission fairly quickly too, with lots of rest. I have faith that if a parent is aware that their child has collapsed, if it's 'Ocular MG', the eyes are affected by double vision, there is a 'drugged look' to the eye/s, if it's 'Generalised MG', meaning the whole body is affected as in my daughter's case, has notable weight loss, has trouble with their face and neck(loses ability to smile, has difficulty eating/swallowing, breathing, finds that temperatures - eg. a warm bath is no longer an option as heat/warmth create exhaustion and exacerbate symptoms), then that parent will insist on being taken seriously, even if it takes seeing more than one doctor. There is no cure, but removing the thalamus(an open heart 4 hr op) may alleviate symptoms - keyhole would be preferable. It may also exacerbate it, but the odds are better for alleviation. The meds for this mean that the immune system is seriously at risk. That is, if the person with MG develops so much as a cold, slight flu, they need antibiotics asap. They go down health-wise very quickly, and can wind up with pneumonia and may wind up 'in crisis'.
Right now, we're hoping our daughter will respond to treatment. We have yet to learn whether the thalamus itself is cancerous, something looked at in all diagnosed with this. We have 3 different hospitals to visit, as each has different equipment that's necessary in the early stages of dealing with it.
There are other cases of this within the autism community, though it's rare thankfully. I'm discovering quite a few people with MG who are neurologically different. Every case is different, responses to treatment will be different. It's about finding a little joy in each day wherever you can, staying positive and maintaining a sense of humour wherever possible. There will be good days and there will be bad days.
15 Dec 2012, 8:57 am
and she has a chronic neurological condition that appears to have a strong auto-immune component. No one has been able to diagnose her with 100% clarity, but currently her doctor says she has "Chronic Fatigue that looks a lot like MS." She does have what could be areas of sclerosis in her brain, but they haven't changed in many years, so they say it can't be MS, but her symptoms expand beyond what one would see in CFS.
