MYASTHENIA GRAVIS
Waiting for a diagnosis
Doctors and neurologists cannot specifically treat every patient with autoimmune diseases, - neurological disorders all the same because all the many symptoms can vary in each individual, to get a diagnosis for any one of them can be very difficult because most autoimmune diseases cannot yet be treated directly but are treated according to symptoms associated with the condition. Only those who suffer from the many symptoms can know how horrendous they are and the tremendous effect they have on their bodies and their lives, although I do not have this disease my daughter does and I have seen her in severe distress and totally immobilised by it.
The agony of waiting years for a diagnosis is indescribable and during the time of waiting the attitude of some people towards anyone with these disorders has left me almost as astounded, angry and confused as my daughter, cruel comments have come from people I would least expect them from including those supposedly qualified, anyone suffering from any of these Myesthenia Gravis, Myalgic Encephalitis, Multiple Sclerosis, etc may also have experienced and understand what I mean and encountered the same kind of remarks, such as its only stress, you are imagining it, or the usual pull yourself together, your not trying hard enough, think positive and you will be ok, thinking positively does not change the symptoms it changes you so that you can discover the best way to deal with your symptoms and thus affect the cure, or at least gain respite from them, even some GPs who try their best, sometimes do not have a clue, and will try to alter medication without realy listening to what they are being told by the patient, if this ever happens it is very important to speak to your neurologist first before any medication is changed. With perseverance and courage once a diagnosis is made it is then possible that with the right medication, and the best life plan that suits you as an individual, it is possible to lead a reasonable and happy life, and remember that not only is it possible for a long remission to occur there are those who have received a cure in some cases.
This site gives some idea about what it is like to live with Myesthenia Gravis if you can bear to read it
www.mgauk.org/ There are indeed many things that can be done to improve life when living with such a debilitating and sometimes insufferable condition, I believe personally in the mind body connection, medically and Holisticaly there are answers to be found, and to all those who are struggling and waiting for a diagnosis I can only say I admire you, and to those who are tempted to make any unkind remarks please be thankful that you do not suffer from any of the above, and that applies to any doctors for what ever or who ever they are treating if they do not fully understand it, because it is still something we are all searching for answers to, only the patient knows what it feels like and how it affects them and even if we feel helpless to do anything listening and understanding as much as we can does help, its called compassion.
WHAT TO DO IF SOMEONE HAS AN ATTACK
SUFFERER OF MYASTHENIA GRAVIS - MYASTHENIC CRISIS
I am not Drunk or on Drugs - I am having a myasthenic crises
As soon as you notice and see the following signs.....
• Lack of concentration and sweating
• Listless, can't move or walk
• Can't open eyes
• Head down and can't move
• Slurred or you do not understand my Speech
• Shallow breathing
• Choking and Swallowing difficulties
Change in temperature can cause me to feel ill, if I get too hot or too cold, please get a fan to cool me down, or if too cold, to wrap me warm. Make me a cup of tea and rest. I find when I rest the symptoms lessen over time.
EMERGENCY - If breathing is difficult please call the emergency services straight away.
A myasthenic crisis occurs when the muscles that control breathing weaken to the point that ventilation is inadequate, creating a medical emergency and requiring a respirator for assisted ventilation. In patients whose respiratory muscles are weak, crises - which generally call for immediate medical attention - may be triggered by infection, fever, or an adverse reaction to medication.
Please read this website for full facts on Myasthenia Gravis - www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm
Chiropractic Management of a Patient with Myasthenia Gravis and Vertebral Subluxations
www.chiro.org/cases/ABSTRACTS/Chiropractic_Management_of_Myasthenia_Gravis.shtml
Pamela
