Old 10-29-2010, 10:48 AM #16 (permalink)
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Default Re: . Requirements for ALS Diagnosis

hi i am new to this forum. i am 38 years old and have progressively become more debilitated over ten years. I was very fit and did many sports and activities. around eleven years ago i started having muscular problems with my legs. this problem progressed and othe muscles became affected. I was sent to a neurologist and had exhaustive tests done. They ruled out the usual like MS and many other conditions. I left without a diagnosis. At that point i had muscle stiffness brisk reflexes. I was given two walking sticks at this point. The problems kept getting worse, walking was becoming very dificult and i was issued a wheelchair. my upper body started having reduced ability. after many appointments and another trip to the neuro ward, i still got told they didn't have a clue what was going wrong. They could see the things going wrong with my body but couldn't explain them. i now have very poor mobility in legs arms. shortness of breath. I am now having swallowing problems, mainly with fluids. I end up with the fluids going into my lungs and end up wracked over coughing. my walking, even with two sticks is very poor, My GP described my gait as Ataxic. Last year i went back to the neurologist for another attempt at getting a diagnosis. i had an MRI and that showed nothing new and that is as far as i have got. I now have nearly all the symptoms of ALS but my GP said there is nothing that he can do. my carer and me are having to try and find out for ourselves what is the cause. I have had my house partially adapted by occupational therapy. has anyone any advice on anything further i can do to find a diagnosis? I have had no joy with doctors, they just tell me they see what is going wrong but there is no explanation why they are happening. I seem to have hit a brick wall. What can i now do? It is hard on my carer and children not knowing what is going to happen and the progression keeps on going.
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Old 10-29-2010, 11:47 AM #17 (permalink)
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Default Re: . Requirements for ALS Diagnosis

You said they have done MRI what about an EMG or nerve conduction study. are these doctors specialist in ALS? I am sorry for the position you are in and not knowing why? Best of wishes to you.
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Old 10-29-2010, 02:12 PM #18 (permalink)
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Default Re: . Requirements for ALS Diagnosis

You sound like a person with PLS. Often takes years to diagnose. Effects bulbar region eventually in many sufferers. You need an EMG to rule out lower motor neuron features. pLS ia a motor neuron disease of the upper motor neurons only. You have brisk reflexes, spasticity, weakness. It causes increasing disability over several years. Moves at about a quarter the speed of ALS on average.
Most doctors even neurologists never see a case so it is diagnosed by ruling out everything else then waiting ...... The waiting is not pleasant.

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Old 10-30-2010, 04:44 AM #19 (permalink)
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Default Re: . Requirements for ALS Diagnosis

There is a good sticky about classification at top of forum list.
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