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peacecomesfromwithin

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I have been trying like mad to move my mom out to DC, but we can't put an offer on a house until she sells her house in New Mexico. Renting doesn't seem like a good option because she has so much stuff, two dogs and cats she won't give up, and throwing high rents to a landlord seems like such a waste when a mortgage would be the same amount.

But the real issue is that the denial persists. I thought that I had come to terms with it, but she is so entirely convinced that she doesn't have ALS/MND that it makes ME doubt it and wonder if I'm insane for thinking that she has it at all.

She won't give me the results from the EMG that led the "idiot doctor," as she calls her, to make an affirmative diagnosis, because she says that she doesn't trust the woman's methods and that they could have skewed the results. She also thinks that her hip fracture could have skewed them. Is that even possible?

She also recently discovered from a hair follicle test that she has high levels of copper toxicity and that her acupuncturist thinks that her house is poisoning her. Can't make this sh*t up! I looked through the forum and found an interesting study showing a correlation of high levels of free copper and faster progression - which would actually make sense in this case! She's started the zinc regimen and says that now she can swallow things more easily - including water. Mind you she didn't tell me before that she couldn't swallow water.

She says ALS is ruled out for her because of symptoms she has that eliminate it. When I asked her what they are, her response: sensory nerve stuff. burning feet, pins and needles sensation, breathing better when lying down instead of sitting or standing, redness and painful swelling in thumb knuckle, slight numbness in some toes, osteoporosis.

Do these symptoms rule out ALS?

Briefly, her other symptoms are inability to move toes or flex feet (walks very slowly with two leg braces and two canes or with walker), muscle wasting in calves and thumbs/hands, inability to pinch/open things with fingers, vocal chord neuropathy, slight esophagus weakness, major tongue weakness (finally had the swallowing test done), muscle twitching/cramping in legs, arms, tongue.

She says she'll do another EMG and other tests once she gets to DC, but I am just afraid that we'll continue in the cycle - living in denial/a dream until things get even worse.

Thanks as always for your opinions and perspectives. You are all amazing and so generous for offering your time here.
 

affected

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So sorry it's so tough.

It sounds like a case of real denial, which is possible, or there could be FTD (fronto temporal degeneration) involved.
 

Atsugi

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In your post, you listed symptoms that point toward ALS, that support the diagnosis. I agree, those symptoms are common to ALS.

You also asked if some other symptoms point away from ALS. Well, let's just say that you're correct, those symptoms do not support the dx.

The big deals in my mind are the weakness the doctor measured and the EMG results. I certainly wouldn't argue with the doctor. But I always advise everyone to get a second opinion from a neurologist who specializes in MND, preferably a world class place like Mayo Clinic.
 

lgelb

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Peace,
There's no question, PALS have more going on than ALS. We all have >1 diagnosis, if we look. But if she has had 2 opinions, she's probably wrong. If she needs another, I would make sure she gets it in NM, if it's taking a while to move, for your own peace of mind. Just because she might be in denial doesn't mean she doesn't need a 2nd opinion like everyone else.

So while nothing you've said rules out ALS, and no, the hip fx didn't screw up her EMG, which measures nerve and muscle activity, the best advice (2nd opinion) is still the best advice.
 

peacecomesfromwithin

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Thanks, all. She refuses to go to the doctor for a second opinion until she gets here, so I guess I will just have to be patient. I wish it was more in my nature!
 

lgelb

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She knows, then, deep down. If she believed in another explanation, she'd be eager for a 2nd opinion to support. But a lot of people grasp at the detox theory; we have a thread on this elsewhere. It can be an expensive form of delay, so be careful and make sure her finances are in order for this move.
 
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