annual phone call with my aunt...

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annual phone call with my aunt...

Postby German2 on December 23rd, 2014, 4:05 am

I had this annual phone call with my aunt, short before Christmas. It was again like last year...we talk about my symptoms and my biggest fear. And she again told me that it took several years before one member of her family was dx with mnd (not my genetic family)....and that one never knows. "The doctors are not that efficiant and thoroughly like former times..." Wow, I had not in mind that she would say this again this year. I had forgotten about same conversation last year...It was not good for my mental state and Christmas celebration at all - neither last year not this year...Next year I WILL remember... :)
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Re: annual phone call with my aunt...

Postby trustme78 on December 23rd, 2014, 5:14 am

Hi there!
When I was wandering through the archives I stumpled about your christmas call to your aunt last year. Sorry that you had to go through the same lecture this year as well.

Lesson learned: Don't talk to people who are no experts in this subject about your fears, concerns, symptoms. I had to learn this lesson as well :-)

Have a nice christmas and don't let your aunt or anyone spoil it for you!
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Re: annual phone call with my aunt...

Postby German2 on December 23rd, 2014, 5:23 am

Yes, we have to protect our minds. Some people are just unreflecting about the emotions of others, not evil minded what they do to you...They cannot imagine what hell we are going through sometime...
Happy Christmas to you, as well!!
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Re: annual phone call with my aunt...

Postby J4son on December 23rd, 2014, 6:24 am

Several years without a diagnosis doesn’t mean several years without a symptom. It usually means several years of obvious symptoms, true weakness, but not enough elements to make a final diagnosis. A month ago at my one year check up with my neurologist, he mentioned a patient he has, a woman, for whom it took a couple of years to be diagnosed. He told me it started with a true foot drop in her left leg. No pain, no numbness, no cramps, no twitching, no tingling or pins, just the muscles of her foot that couldn’t raise her foot anymore. Then it progressed to the whole leg, and finally a foot drop appeared in the right leg. In the beginning she was sent to orthopedists instead of neurologists, and a doctor thought she had some severe back issues. Based on that she had a back surgery with of course no improvement. Later and after nearly two years of obvious symptoms, a diagnosis of MND was made, at that moment she was already in a wheelchair. So people should not confuse the period between first symptoms of obvious clinical weakness and a final diagnosis which can vary from a few weeks to a few years, and the period between only twitching with no clinical weakness and then the onset of weakness, which is completely different.

This is why I do not give a lot of importance to some anecdotal stories written on internet either on the ALS forum or elsewhere, because we read what the person says from her own point of view without being able to check his medical records or to ask his doctors if the story as being reported on internet matches the medical records of the patient or not. That’s why I prefer to rely on published medical studies made by experts rather than the subjective opinion of someone who does not have any medical background.
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Re: annual phone call with my aunt...

Postby German2 on December 23rd, 2014, 7:28 am

That's right J4son. Though I did not read any study beside the content of this website. I know that this relative had an onset of weakness in one hand. No more info here for not to trigger others. I never heard of twitching in this context of her desease. She must have lived with it for much more than ten years. Dx was just in the very end. As far as I know she did not want to see a doctor in general..Wheelchair came late and she had additionally kind of shizophrenia in the end. But I ask myself if - in case of onset of weakness - could it be that there are no further signs to diagnose? I mean pathological reflexes, dirty EMG and so on? I mean this is what we are checked for all the time.
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Re: annual phone call with my aunt...

Postby leaflea on December 23rd, 2014, 1:08 pm

Your aunt's claim that doctor's do not check as thoroughly any more is nonsense. You have been checked out more thoroughly than most, I believe you can agree. Another thing is that many people avoid going to the doctor and ignore early symptoms thinking they will go away, or go to orthopedists. That would delay a diagnosis. Most of us here go straight to the neuro - no one is referred to an orthopedist for twitching.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: annual phone call with my aunt...

Postby German2 on December 24th, 2014, 11:13 am

Yes, Leflea you are right. I am well checked, as far as possible. My symptoms drive me mad (not just twitching) but I have to live with no clear answer, just approaches of explanations actually. And I have to trust that doctors did their very best to examine me...Merry Christmas to all of you!
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Re: annual phone call with my aunt...

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