Quote:
Originally Posted by alice md
First, I am so glad that you were finally given a proper diagnosis.
Second, I am so sorry to hear of what you have been through.
Third, there are many types of congenital myasthenias, and some can be treated very effectively. And they are constantly finding new mutations.
If you have a diagnostic EMG (I still find it hard to believe that no one thought of doing this test before!), then you may want to try and get to Dr. Andrew Engel at Mayo clinic.
I do hope you get a more accurate diagnosis and the proper treatment you deserve (and have deserved for many years).
And keep fighting for your dignity and proper medical treatment.
You are not the only one that has to deal with this.
An excellent psychiatrist (probably similar to the one you saw) said this years ago-
"In the main the diagnosis of ‘hysteria’ applies to a disorder of the doctor–patient relationship. It is evidence of non-communication, of a mutual misunderstanding ... We are, often, unwilling to tell the full truth or to admit to ignorance ... Evasions, even untruths, on the doctor’s side are among the most powerful and frequently used methods he has for bringing about an efflorescence of ‘hysteria’... The diagnosis of ‘hysteria’ is a disguise for ignorance and a fertile source of clinical error. It is, in fact, not only a delusion but also a snare.”
Eliot Slater, ‘Diagnosis of “Hysteria”’, British Medical Journal, 29 May, 1965, p. 1399
alice
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I really do appreciate your reply. I see your responses and involvement with others and you are amazing! Thank you for the Dr's name at the Mayo, I will keep it in my paperwork. This neurologist wanted me to go. Had me set up with an appointment and everything, but, my disability does not cover it.
Felt like my neurologist was as let down as I was. I still wish I could go.
The quote is so true. I had read while looking up the psychogenic/conversion that this is what doctors call hysteria. Interesting. They seem to cause it.
I read some of the threads of ones not diagnosed yet, oh, what a painful spot. It really wears on you. I feel so bad for them. I hope they all get their diagnoses, atleast close enough to get the help they need.
One factor that held back getting help was I was in Alaska for half of that time. My general practitioner was so encouraging. He hung in there with me thru alot of years. He always said he tought it was either MG or MD. He was seeing me when it hit so hard.
Many neurologists tested me in the past for MS. Everyone has thought I had MS. So, I get tested for MS. I do not meet the criteria and I am dismissed. 'Let me know if you get any worse' I am told. Ha! If I come back, worse, I am told it is mental.
Truely it only takes one report saying it is mental and this stops many from being willing to go any further.
I had gotten to where I only went in to the neurologist when I was doing better. That didnt go over well, but I could no longer bear being treated so awful while at my worst.
I also realized many have assumed it is my legs that make it hard for me to walk. But actually it is more my hips. I clarify this now and insist the physical therapist reports are actually read and considered!
The psychiatrist I had seen answered alot of my questions and her response to why all the overboard diagnosing of conversion/psychogenic, etc, made alot of sense. My friends kept telling me it must be my insurance, I did not agree. She said the doctors have a reputaion. Alot of their reputation is their percentage of diagnoses. They want to maintain a high ratio, 98/99%. If you are not text book and will take time, this will lower their diagnoses ratio. So...they throw out the easy 'mental' diagnoses. Voila', they maintain their high ratio, sadly the patient suffers. Sure explained alot to me and helped me look at them different.
Anyway, thank you for your response. I am so glad your friends and you are on here. All of you are obv very intelligent, caring and full of useful information.