Old 11-03-2012, 04:03 PM #31 (permalink)
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Interesting.
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Old 11-03-2012, 06:00 PM #32 (permalink)
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Heavier people, fatter people do better with ALS. It's a fact.
I'm happy to know this Ms. Pie- I've gained 16lbs (and counting) since D Day, April 5. I'm sure it's nervous eating- and was seriously thinking of dieting... but maybe I'll just keep buying bigger clothes!
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Old 11-03-2012, 09:16 PM #33 (permalink)
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Elaine, absolutely no dieting! Folks with ALS are never to diet!
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Old 11-03-2012, 09:40 PM #34 (permalink)
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Would you please clarify what you are meaning by your first comments, ending with, seriously? Are you saying it should have been ruled out, or should not? I am told I have only lower motor neuron involvement. Please offer more comment, including your comment that I need a new neuro.

No, I have not asked about a possible paraneoplastic syndrome. I certainly will. I am pursuing issues pertaining to elevated liver enzymes, as an infectious disease specialist told me my neuro symptoms could be the result of a liver disorder. I have an appointment in January at the university, as that was the soonest I could be seen.
Hi

If your doctor is not answering questions, first, he needs replaced. Second, while I hope it is NOT the case, it is possible initially with ALS to have LMN issues only, I'm almost sure. While UMN and LMN both are required for an ALS diagnosis, LMN issues in several areas would not put it off the table as something to be ruled out. It would or should still be one of the differentials to BE ruled out. It takes some time with no UMN developing for it to be completely ruled out. Obviously, we all hope it is something else. There are other less sinister (translated as less deadly) things that cause LMN only issues, yes, but as you well know, LMN issues are quite enough with atrophy, weakness and loss of function.

You're level headed enough to investigate some of the LMN possibilities. if I'm fast enough, I'll try to go back and reread your other posts....and find the condition that has escaped me.


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Old 11-03-2012, 09:44 PM #35 (permalink)
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Elaine

Notme and I don't always share opinions, but I'm shoulder to shoulder with her on this one.ne;I lwas just reading a paper about the fact that people who are overweight live longer than the skinnies of this world. No dieting!
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Old 11-03-2012, 09:46 PM #36 (permalink)
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Regarding post 34 above:

I have effectively replaced the first doctor who did not answer questions. The second one is at the university. She does answer questions. My only concern there is her language about, follow me clinically, feels a bit too passive to me. I am pressing for a more active approach, and will be asking questions based on things I have learned here.

Thank you for your clarification!

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Old 11-03-2012, 09:57 PM #37 (permalink)
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Forrester,

I see the others have already given you the names of the LMN only conditions, but combined with no dieting weightless, I'm still concerned about the paraneoplastic possibility, especially with elevated liver enzymes.

Get a copy of your EMG report. A NCV is done at the same time as it was done. We have members that can translate it for you. The pred. You were on for the pneumonia is a low dose, likely a medrol dose pack.

And you need MRIs, not just CTs to be sure there is nothing going on in the brain, they are almost always part of the ruling out package.
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Old 11-03-2012, 10:07 PM #38 (permalink)
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I will get the EMG and NCV test results next week. I suspect I can't simply request MRI's of my brain and cervical spine.

I am pressing to get to the liver specialist as soon as I can, tenatively dated January, unfortunately.

Thank you for your thoughts.
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Old 11-21-2012, 08:01 PM #39 (permalink)
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Update; a minor note, I did have MRI's, my previous comments were in error.

Presently I still only have lower motor neuron symptoms. I learn from the specialist at the university that some scattered over the nation sort of conferring group she participates in believes I have ALS, not because I have upper symptoms, but that I will likely get them.

I ask if there are people who only ever get lower, she says.... sure! So, I don't get the compulsion to say I will. Demographics, she says, and my age [62]. She also says she does not know.

My symptoms are odd to her in one respect. In the morning I feel bad; low energy, unsteady, poorer walking gait, low vigor. As the day goes on [I work full time], usually about 12-2 PM, I really get a lot better. More steady, more energy, more strength, more vigor. I am advised that is the opposite of most motor neuron or ALS folks. She is puzzled by that. Do you have thoughts on that?

I am referred by the university to Mayo, as they are out of ideas. That appointment has been made, it is in January. I am also set up to see a Lyme clinic in another state in March.

I got a brace for my foot today, it is for the drop foot. It is very effective.

This is what I know just now.

I just now realize I need yet to get the results from the electrical tests. What form should they take so the person or people here can examine them?
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