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Are psychosomatic symptoms similar to MG?

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Unread 01-29-2013, 03:50 PM   #51
Anacrusis
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Default Conversion or convenience?

Is it conversion disorder or is it a bunch of neuros who have no real evidence and who got together and decided to create a convenience disorder for themselves so anything a little more complicated might hopefully just have time to reallocate itself?!!!!

Here is a nice discussion. I wonder if anything has changed since 2010?

http://www.mga-charity.org/forum/pre...rsion-disorder

Take a look at what is happening other places ….Oh! - Yet another example of convenience disorder at work!.....

http://mcs-america.org/index_files/M...nStatement.htm

´A study shows 80% of MCS patients report no benefit from psychotherapy to cure MCS and 15% have reported further harm.58 Though 65% find psychotherapy helpful to cope with the dramatic life changes MCS bestows upon them, psychotherapy is obviously not a cure, as MCS is not a psychologically mediated disease.58 Further, psychiatric drugs such as Zoloft, Prozac, Elavil, and other antidepressants were reported to harm an average of 60% of those who tried them and had no effect on an additional 25%.58 Drugs such as Valium and Xanax proved to harm 45% and had no effect on an additional 30%.58 There is not a single empirical study that shows any significant remission rate in the symptoms of a cohort of environmental illness patients from counseling or psychiatric drug therapy´


Have a wonderful week.......


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Unread 01-29-2013, 11:11 PM   #52
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If any other branch of medicine tried to suggest that 30-50% of their patients who had involuntary physical signs/symptoms were suffering from psychiatric problems they would be vilified or fired!!

Not only that, this determination is made on the basis of absolutely no evidence base or objective testing. The neurologists claim there is nothing physically wrong with these people because their tests show normal results. However, they expect everyone to unquestioningly accept that there is something psychologically wrong in the absence of any testing at all.

They have used this baseless diagnostic process and been proved wrong time and again as medical science and testing has advanced and it has become apparent that there is an underlying physical cause for neurological conditions. One might think that this would breed a rather more cautious approach to avoid inevitable, future "red faced embarrassment" but it seems to have the opposite effect.

It is an affront to logic and common sense which is compounded by the fact that all the attempts to define or describe what functional/conversion etc disorders actually are have completely failed. It would by laughable if it wasn't such a personal disaster for so many people.

The whole situation is absolutely perverse and its a shameful scandal.
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Unread 02-14-2013, 09:46 AM   #53
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Quote:
Originally Posted by Neurochic View Post
Not only that, this determination is made on the basis of absolutely no evidence base or objective testing.
´The authors confuse absence of evidence with evidence of absence. They are not the same. Absence of evidence may reflect insufficient research, inadequate technology, poor methods, flawed paradigms, closed minds, or lack of clinical experience;…´

I was thinking the other day how incredible a process it really is if a person who supposedly has´conversion disorder´presents with symptoms mimicking myasthenia gravis, for example, Marry Walker phenomenon of which they may never have previously been exposed to or heard about.
That a patient can take on 99% of a disease profile without prior knowledge of that disease is really quite an extraordinary phenomenon in itself!
How can we do such amazing things? Can we really be pre-wired to manifest such exact symptoms without actually having the disease itself or relative of it?! If this is so, where are all the interesting research results, studies and reading to be found on the topic of how this process occurs?

99% MG symptoms + negative MG tests = widely accepted´accuracy´for not having MG disease

So I was looking for the tests with widely accepted accuracy for conversion disorder. Where ARE those objective tests?

Well…as usual, on a tangent I came across yet another interesting & well written article, as an entity in itself, but also controversial
if you read about the alternative forms of treatment recommended:

http://mpkb.org/home/alternate/psychosomatic

* (above quote from this link)

Last edited by Anacrusis; 02-14-2013 at 11:02 AM.
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Unread 02-14-2013, 11:01 AM   #54
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Many years ago I tried to get on social security disability. The doctor who interviewed me from ssdi was a psychologist. I was going to a doctor for physical problems yet it was assumed that there was something mentally wrong with me. The psychologist brought up things in my past that I didn't want to talk about with him. I was beaten as a child and alienated from my family after I ran away at 16. Later I was beaten by my ex-husband, who I'm no longer with. Talking about this tore me up inside but it wasn't the cause of my illness. When I left the interview crying the psychologist followed me out to my car and said that I need counseling, but that it wasn't what was causing my illness. He seemed to think that something environmental was causing my illness. It's funny that a psychologist thought it was something physical and medical doctors were thinking it was something psychological. Maybe the Psychologists need to stick to psychology and the medical doctors to the physical. I was denied ssdi but there was a note that I did have some issues.
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Unread 02-14-2013, 11:21 AM   #55
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Quote:
Originally Posted by Quandry View Post
He seemed to think that something environmental was causing my illness. It's funny that a psychologist thought it was something physical and medical doctors were thinking it was something psychological.
That is really weird Quandry - it is NOT the first time we are hearing of this role reversal happening
I can imagine it´s enough of an ordeal to have a hard childhood but on top of this the added ball and chain round your ankle connecting
any subsequent new diagnoses´conveniently´to your past experiences..... I do know someone with PTSD who did not get diagnosed with MG
for over 30 years despite symptoms as a child - but I would not draw a conclusion from knowledge of one single combination case.

Thanks for sharing
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Unread 02-14-2013, 12:40 PM   #56
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Quote:
So I was looking for the tests with widely accepted accuracy for conversion disorder. Where ARE those objective tests?
Oh here they are!:

.....´Your symptoms aren't fully explained by a general medical condition, drug use
or a culturally accepted behavior, such as experiencing visions at a religious ritual.´


WHAT????????........

Criteria from here: http://www.mayoclinic.com/print/conv...l&method=print

I really think it´s time to call it a day

Have a wonderful and hopefully minimally myasthenic weekend
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Unread 02-14-2013, 10:13 PM   #57
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Funny I should run across this topic after having just experience this same thing last month.
My local neurologist was convinced by my symptoms that I had mg, but had no positive lab tests to prove it. After much foot dragging, he finally convinced me to go in the hospital for prednisone and Ivig treatment. He told me that the sixty mg of prednisone would probably make me worse. He was right about that! I got to the point where I was unable to chew or swallow solid food or pills. I was unable to talk or breathe well at times and my heart was not happy.
My eyes were very difficult to hold open and when I did, my eyes were painful to focus or move and my vision was blurry.
He was afraid I would have respiratory failure, so decided to send me out to Mayo, but hey didn't have a bed due to flu epidemic , so second choice was Emory University. I was not happy about having to be in the hospital, but I knew at least there they would get me a diagnosis.
They performed every sort of test on me and all the myasthenia gravis ones came up negative. Including the EMG that was performed while I was on mestinon. By this time I had progressed to needing a feeding tube.
Since all the tests were negative, and especially since I already took a .5mg nightly dose of Xanax to help me tolerate cpap, it had to be a conversion disorder that was causing all my symptoms, including my low blood pressure, palpitations, tachycardia, etc. they decided to withhold my mestinon without my knowledge and actually substituted Tylenol for one dose. There notes stated that I got better, but complained that I was worse. Then they cut the mestinon down from sixty to thirty mg every three hours.
I could tell that something was not right as the relief and the length of the relief period was greatly reduced, but I did not know what was going on on the background.
Upon their consensus that I was psychiatric, they abruptly pulled the nasal tube, took me out of icu, and put me on the regular floor. The only reason that I discovered the dosage reduction was when the floor nurse came in and plopped down a half of a mestinon tablet in front of me like a rude waitress. I told her it had to be crushed as I could not swallow and she seemed a little miffed at me for saying this. I think my saving grace was that by this time, the Ivig was helping me so that eventually I got adjusted to the reduction in mestinon.
By and by the whole troupe of doctors, including a psychiatrist and a neurologist came in and they decided that I could follow up in the clinic, but what I really needed was counseling.
I told them that I would be more than happy to seek counseling if that would make me well. In fact I told them that if it was in my head, that was a good thing. Because that meant that I did not have a life altering illness and that I was sure that I could get better if that were the case. I was open to any and all treatments.
So I mustered enough strength to be able to make my way shakily down the hall, at which point I was exhausted and didn't think I could make it back. I really needed to sit down and my legs were shaking with fatigue. Somehow I willed myself back to my bed with my only goal being to get out of there and get home.
I went home and next morning I called my local neuro and he was highly aggravated with what I told him. He told me to have someone drive me to Mayo Clinic ER. So I did. Well, of course they wanted the Emory records, and naturally they went with the first thing they saw, and they dismissed my symptoms and told me to get an appointment in the clinic.
I just was ready to give up and go home and forget about everything, and just learn to live with this thing.
A few days later my neuro called to tell me that my LEMS test had come back extremely positive and that he wanted me to come to his office right away. He explained what I had and put me straight in the hospital for five days of plasmapheresis. I am so happy that I got a diagnosis and that I got a treatment that has made me feel better.
I am now able to chew and swallow, my neck Dow not hurt, my eyes are almost normal. I still have some weakness and instability, but I can at least function and talk now.
So that's my story of my conversion disorder! I intend to get a copy of my positive test and formulate a letter to the offending people at Emory, not just for my own satisfaction, but for the future patients that may be so unfortunate as to end up there.
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Unread 02-14-2013, 11:38 PM   #58
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So sorry you had to go through that. So after the plasmaphoreisis, are you taking any medication now?
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Unread 02-15-2013, 04:27 AM   #59
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Quote:
Originally Posted by limpy View Post
By and by the whole troupe of doctors, including a psychiatrist and a neurologist came in and they decided that I could follow up in the clinic, but what I really needed was counseling.
In addition to Kathie´s question. What tests did the psychiatrist perform to establish that your myasthenic weakness was being diagnosed as conversion disorder?

Observational during symptomatic crisis? Anything else?????

Limpy! that is one heck of a story.
Congratulations on getting through all that and getting somewhat of a´helping hand´with your positive LEMS diagnosis

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Unread 02-15-2013, 08:56 AM   #60
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I forgot to add that along with their spot on diagnosis, while still in ICU, and not having been seen by any one other than the the critical care ICU doctor, they also withheld abruptly, the prednisone that I had been on for eight days at the other hospital. That alone was enough to send me over the edge. I did not see a psychiatrist or have any 'psychiatric testing' to make this conclusion. It was already determined before I left ICU that I was psyciatric.
The psyciatrist and his underlings came into my room and questioned me about my childhood, etc, any trauma, Yada, Yada, to clench the diagnosis.
They quoted me that I said I was 'frustrated'. They neglected to mention that I had elaborated that I was frustrated that I had gone through all this hospitalization, treatment and unpleasant tests and still had no diagnosis, which was why I had come there in the first place. They also mentioned that I said I was attached to the mestinon. Of course I was! It gave me a few hours of relief in this hell I was going through!
They never laid eyes on me while I was at my worst.
I should have known something was up, when on the first day I was in ICU, the attending doc came in and said that they see young people come into the ER all the time that get into their parents mestinon and use it to get a buzz and overdose, and end up in the ER. I told him that sounded ludicrous. I told him there was no euphoria or buzz associated with mestinon in my experience. That it only temporarily relieved some, but not all of my symptoms for a short time, and made me able to think about something other than this dreadful condition.
I asked him why anybody would take such a thing voluntarily, especially given all its unpleasant side effects while your body is adjusting to it.
This made me think he was grasping for straws then, as I started wondering just how many medicine cabinets were actually stocked with mestinon, that would make it so available to these young people he spoke about.
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