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...
Some times we find a website that summarizes MG. This seems reasonably complete and not too technical in the first part and quite technical in the second part, so both new folks and those of us who have tried to delve into the details of MG can read it and maybe learn something.
https://emedicine.medscape.com/article/1171206-overview
One of the statements: "Patients become symptomatic once the number of AChRs (muscle receptors) is reduced to approximately 30% of normal."
I have also read that by the time we start treatment for general MG, we may have only 20% of our muscle receptors left. There is built in redundancy in our muscle receptors that lets us get far into MG before major symptoms arise, and so that is why we are so close to crisis at the start of treatment. Although we can live almost normally on 35%, much under 30% and breathing becomes a problem.
That is why we need to be very insistent and persistent to get treatment underway. Far too many folks get diagnosed and then go into a crisis before treatment works. Any delays in getting immune system suppression treatment can push us into a crisis at this stage.
Think about this when you give advice to new folks with MG, if they have symptoms, they have already had severe loss and are on the edge of hospitalization. Is your advice going to fix that?
Russ
And I was quite outraged when you told someone recently that you considered suicide after diagnosis. Dude think about what you are saying when people come here scared and nervous about diagnosis.
The 15% statistic is AFTER Prednisone came along. Before that about 40% of those with MG died in the first 2 years. That was before mechanical ventilation was available to keep the person alive on a machine until treatment got working. Untreated MG is deadly!
Intubation is not a criteria for mg crisis -- many places first treat MG crisis with BIPAP or other external ventilation. See https://www.ncbi.nlm.nih.gov/pubmed/18195139 for example. My own stay in the neuro intensive care unit was solved by very large doses of Mestinon and prednisone and a BIPAP to keep me breathing. Mayo tries external before intubation.
Depression and suicidal thoughts are common in folks with MG.
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2011000200006
the study reports:
OBJECTIVE: To investigate the prevalence of psychiatric disorders in patients with myasthenia gravis (MG).
METHOD: Forty-one patients with MG answered to a structured psychiatric interview (MINI-Plus).
RESULTS: Eleven (26.1%) patients were diagnosed with a depressive disorder and 19 (46.3%) were diagnosed with an anxiety disorder.
CONCLUSION: Psychiatric disorders in MG are common, especially depressive and anxiety disorders.
My view of MG is that it is a cause of anxiety and depression and it occurs after diagnosis and because of the diagnosis and the disability of MG, and must be addressed by the doctor, as it was in my case. Knowing that others have faced this, thought of suicide, but didn't do it is better than sweeping it under the rug.
I find the most disturbing response to those who come here with newly diagnosed MG are those who insist on telling them to change their lifestyle by trying some odd diet, supplement, pin poking etc, when we know from the past that without immune suppression and machines to keep them alive, 40% of MG folks died in the first 2 years.
It is irresponsible to blame the patient for getting MG by saying that lifestyle is the solution, which makes the implicit assumption that if you got MG you must be a slacker. I did do the right things and got it anyway, and only immune suppression got me back going.
What must be done is make them understand the seriousness of MG, (yes you might die) and the danger of going untreated, give them some hope, and insist the only real solution is to seek an experienced neurologist ASAP and get on treatment. And then advice on how to navigate the medical system, the side effects, and dealing with a chronic disease.
Look for a Nuerologist that specializes in MG. If one isnt available have a person call for you (if you can't) to find out what options are available in your area. Usually you can get referred to the nearest specialist because of crisis.
Problems chewing:
Pill Crusher
Liquid Diet or Puree Diet
Consult With a Nueorologist
Eating helps us but we have to eat smaller meals and stay away from anything that will get stuck in our throats.
Weakness in limbs.
It takes about 3-6 months to recover pending severity.
Take your meds and rest. I used the forum journal as an outlet and you can talk with any of us MGers to help cope.
Get a walker and or wheel chair. If you have insurance or medicaid it covers the equipment. There is even home health care to check on you daily if you live alone.
I'm currently bouncing back from a crises. it will be long and drawn out but you can and will make it. Make sure you have a loving support system because we all need it. its important to try and keep our stress levels down. if you need to cry, do it in a safe place. It is ok to let that frustration out just try not to let it control you. along with my regular meds I'm trying the below to see how it works. Just remember if you have a doctor consult before you try this.
https://www.superpharmacy.com.au/blog/myasthenia-gravis
1) depression has nothing to do with mg, it is a mental condition that may start at a youn
I might just find myself agreeing with you, at least as far as depression goes. It might be common in the US... To be fair the opening post was perfectly OK in my view.
Peter