Old 01-18-2011, 10:51 AM #31 (permalink)
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Default Re: A lot of questions.

Dear Gene,

I'm so sorry you have this. Your daughter's help must be priceless, as getting a diagnosis is difficult and having an advocate is enormously helpful. I hope that you will continue to post, and if there is any encouragement we can give you, we want to be useful.

Best wishes,
Ann
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Old 01-18-2011, 05:43 PM #32 (permalink)
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Default Re: A lot of questions.

Good for you.
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Old 01-19-2011, 08:16 AM #33 (permalink)
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Default Re: A lot of questions.

Hello, I'm posting reply because I'm new and not sure how to post a new thread. I have a question about my condiiton, took. I've been to doctors and get no help. For the past two years, the muscles in my neck, head, shoulders have been weak and almost like cement. I have real difficulty holding up my head and swallowing. Sleeping is really hard. When I am at rest, my leg twitches a lot. I can walk, bu sometimes stagger. I find it hard to write a check and do things I used to do.
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Old 01-19-2011, 03:53 PM #34 (permalink)
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Default Re: A lot of questions.

Sorry that you have to be suffering. Do you have any speech problems or swallowing. Have you seen a Neurologist? You do have some strange symptoms.

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Old 01-19-2011, 04:17 PM #35 (permalink)
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Default Re: A lot of questions.

Rose,you took the words right out of my mouth ............i feel exactly the same about how some people are treated.

Blizna,thankyou for sticking up for alex and being there for him.
i will send him a pm and show my support.
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Old 01-19-2011, 07:16 PM #36 (permalink)
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Default Re: A lot of questions.

Ok, I want to apologize to everyone including Alexandre who was offended by my flippant and insensitive post on this thread. This is a case where my warped sense of humour (and a bad day) got in the way of my compassionate side.

As someone who didn't come here, or even know that there was a "here" to come to, for over a year after my first symptoms and ten months after my diagnosis I sometime forget that not everyone is as lucky as me in getting a clear and relatively quick answer to their symptoms. That said, I would never go to the internet to try to self diagnose regardless of how incompetent I felt my doctors to be or how inconclusive their reports. We all need to be responsible to and for ourselves in resolving our issues and to decide to believe or not believe what we are told. If your doctor tells you something that you do not believe then please get a new doctor, if we tell you something that you don't believe then that's fine too but please don't keep asking the same questions over and over again because the answers that you get will be the same as they were the first, second or fourth time.
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Old 01-19-2011, 09:19 PM #37 (permalink)
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Default Re: A lot of questions.

Dear Suffering,

Has your doctor sent you to either an "Ears, Nose, and Throat" (an ENT doctor) or to a Neurologist for testing? I am pretty sure you should be seen by one or the other--or by both. I can't begin to know what is happening, but think you should be having some serious testing.
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Old 01-25-2011, 09:15 PM #38 (permalink)
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Default Re: A lot of questions.

Dear Suffering,
I agree with Ann- strongly encourage you to see if you can get to an ENT and/or neurologist. I'm so sorry you're having such a difficult time.
Peace,
Melody
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Old 02-24-2011, 04:00 PM #39 (permalink)
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Default Re: A lot of questions.

I have a quick question.... it is kind of off subject to the original post... i am new here i have been reading different post off and on.. i am having my own issues... anyway my question is to Wright, i thought that an EMG could be used to detect what ever it is it detects if it is done in the bulbar region. I had read somewhere where a lady had it done right in the chin or under it cant remember exactly now. Is that wrong?
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Old 02-25-2011, 09:24 AM #40 (permalink)
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Default Re: A lot of questions.

I'm not exactly sure what you are asking . . . but if you are asking if an EMG can detect lower motor neuron dysfunction of muscles controlled by the bulbar region, the answer is yes.

As far as your question about needling under the chin: Often the neuro will drive the needle into the tongue from under the chin.

I hope that helps.
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Old 02-25-2011, 11:32 AM #41 (permalink)
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Default Re: A lot of questions.

Here are my two cents. As bulbar onset ALS almost always develops into limb onset an EMG done on the limbs will usually detect problems even if no limb symptoms are noticed by the PALS. That was the case with me, I did not have an EMG of my tongue but the tests done on my legs and arms detected problems a full year and a half before I noticed them. At the time of testing my speech was still understandable but quite slurred.
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