FAQ/Help |
Calendar |
Search |
Today's Posts |
|
Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
Reply |
|
Thread Tools | Display Modes |
01-05-2013, 09:06 AM | #11 | ||
|
|||
Member
|
|
||
Reply With Quote |
01-05-2013, 09:19 AM | #12 | ||
|
|||
Member
|
We highly appreciate your sharing of opinions old and new, and the really fascinating quotes, Alice
I fully agree with that, and they also need to be diagnosed correctly. Hope things are going better with family and health today, and thanks for sharing your view on the effects of stress, Celeste. So does anyone know? Do psychosomatic illness symptoms resemble those of MG? Anacrusis |
||
Reply With Quote |
01-05-2013, 10:06 AM | #13 | |||
|
||||
Member
|
Quote:
MG is in the differential diagnosis of conversion/functional disorder. |
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 10:17 AM | #14 | |||
|
||||
Member
|
Quote:
Can conversion disorder have a radical response to treatment due to placebo effect? Can this go on for years? Also, there comes ptosis. I can imagine my legs week. I can't imagine my right eyelid to stop working correctly while my left one works happily along. Is this the deciding factor that makes the differential diagnosis?
__________________
Celeste |
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 10:41 AM | #15 | ||
|
|||
Member
|
|
||
Reply With Quote |
01-05-2013, 10:58 AM | #16 | |||
|
||||
Junior Member
|
Quote:
I have a negative SFEMG and a negative acetycholine. On this basis MG has been ruled out in my case. Clearly in the last weeks I have developed symptoms that are not consistent with MG. However, since these new symptoms haven't even been assessed I wonder how they can know whether it is related to what-ever-it-is or not. I may be a nutter. There is no way of me - or anybody else - truly knowing the answer to that question. I have no acute 'emotional' problems that I'm aware of, but then, I might be repressing them. How can anyone ever know? I was assessed by a psychiatrist right at the beginning of my being ill three years ago. He advised I didn't need any therapy and stated that I was clearly managing remarkably well, noting that he could not identify any psychiatric issue. A psychiatric diagnosis is a diagnosis of exclusion; I have a negative SFEMG and acetycholine so I don't have MG. But if I have a negative psychiatric assessment, that doesn't seem to count for anything! I'm still a nutter. Sometimes I think I MUST be mad because they don't find an answer. |
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 11:29 AM | #17 | |||
|
||||
Member
|
I think everyone is a little bit insane in one way or another. Some of us also have other health issues, such as MG.
__________________
Celeste |
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 11:36 AM | #18 | |||
|
||||
Member
|
Much better today after 10 hours of sleep. Rest does more good for me than mestinon.
Mike |
|||
Reply With Quote |
"Thanks for this!" says: | Anacrusis (01-05-2013) |
01-05-2013, 01:11 PM | #19 | ||
|
|||
Member
|
I think I am most worried about our ME/chronic fatigue syndrome friends where the worst case patients cannot handle any muscular stimulation and spend years in dark bedrooms with curtains closed to the outside world. Itīs as though they have continuous myasthenic symptoms that are not relieved by rest, and some interventions (also including exercise) have proved fatal. Normal well balanced children have also contracted the disease. I watched a program once about how the medical system had abandoned this group of patients and just left them to their families to care for at home.
The use of rituximab was used in trials a couple of years ago.... http://www.tv2.no/nyheter/innenriks/...y-3615631.html But the last I heard is that they ran out of governmental funding for these experiments. Maybe thatīs why only 10 patients are getting the trial there which ends December 2013 - whilst there are approximately 15,000 sufferers in the country. http://esme-eu.com/treatment/a-drug-...le468-110.html With a little distance to my own worst symptoms I find that energy & health trumps any diagnosis and all opinions, I care less and less about WIW (whatever-it-was) and more and more about others having to go through the same palava as I did. Its like Alan said - a lot of emotional support from friends yes, but would have been nice with a little more medical assistance where needed! If my own symptoms ever return with avengeance then getting a good doctor and getting the right treatment is the most important thing, Whether I would get it I donīt know, but at least now I know a little more about how to |
||
Reply With Quote |
01-05-2013, 03:16 PM | #20 | |||
|
||||
Member
|
This has always been my biggest problem like everyone else having had two neurologist and being diagnosed then not being believed i am a nutter and a very happy one how much easier it would of been to of had support and understanding from the neurologists I've always known that my ability is having faith in myself and not allowing that to be lost thou being told that I have chronic fatigue syndrome months ago by my neurologist ouch that hurt
I don't think it's a male female attitude my experience was and is the same I don't think psychosomatic symptoms are the same as MG all the positive thinking can not stop the weakness nor can fighting the weakness thou mind and body are all one What is odd is the power of the mind man and dog can have symptoms of being pregnant a person can walk on coals and not burn or the super human ability to for a brief moment and what M.E CFS go throu has been and still is cruel. I'm waiting for a phone call for my other problem parathyroid and almost a year to find the problem the Dr has been great listening to my views. What I do know is how grateful I am for the questions and amazing input their is from everyone and knowledge Alan |
|||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
My Wife & I - Similar Symptoms Within Weeks | New Member Introductions | |||
Anyone have similar symptoms? | Parkinson's Disease | |||
Symptoms similar to human form of mad cow disease | General Health Conditions & Rare Disorders | |||
Psychosomatic symptoms | Reflex Sympathetic Dystrophy (RSD and CRPS) |