Probable diagnosis coming Wednesday- what questions should we ask the neurologist?

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KJCB

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What a great group of people you all are -- thanks for providing this service! My sister has an important neurologist appointment on Wednesday, and I'd love some advice on the questions we should be sure to ask.

She has dramatic weakness and wasting of her thighs/quads. Some weakness in her arms as well, all of which is progressing noticeably to her and those around her by the week. She is now using both a walker and a toilet chair positioned over the toilet (a bar on the wall is no longer sufficient for her to pull herself up). In the past week, we've had several incidents where her legs give way and her arms can no longer sufficiently support her weight -- if she continues to progress at this rate, I think she'll be in a wheel chair by Thanksgiving.

Here's the backstory:

My sister is 41, has bipolar disorder, and is on psych meds. She started complaining about having trouble climbing stairs about three months ago. Once she realized it was more than just being out of shape (she has a sedentary lifestyle), about a month was spent assuming her problems were side effects from those meds. After her psychologist took her off anything that could possibly be causing her weakness, restless legs, and leg twitching, and it persisted, he told her to see a neurologist.

While we waited for the neurologist appt., we also went to the primary care doc, and from that appt she was sent straight to the emergency room -- her blood sugar was 410 and a1c was 14.8 (very high, for those who aren't familiar).

I did some searching and assumed she had diabetic amyotrophy, but once we saw the neurologist he said that condition is associated with quite a bit of pain and numbness (she's had neither). Side note: Her basic blood levels were normal (including B12 and Thyroid). She had an MRI scheduled, but medicaid didn't approve it and the neurologist said he didn't need it to diagnose.

My mom went with her to the initial consult with the neurologist, where he discovered she also has weakness in her arms (especially the left). He told her it wasn't MS, unlikely to be MD (we have no family history) and that he couldn't rule out ALS.

The next day, when the neurologist did the EMG (which he did on her left side), he didn't tell my mom and my sister anything after except "we're looking at a neurological problem, not a muscular one." I wasn't there, and I think the doc was picking up on the fact that neither of them was mentally prepared to hear much at that time - no test results were shared. He then said he wanted to do additional blood tests, and she needed to wait a week to give that blood because the EMG would mess up the blood levels (which seems weird -- couldn't he just have taken blood first?). Then he wanted a week to make sure the results came back.

So, it's now been two weeks, and she's gotten much worse, as I said. Based on what I've read, it seems like she has a lower neuron disorder. Just from watching her (as a lay person), she doesn't seem to exhibit any upper neuron symptoms -- when the neurologist tested her reflexes, they were non-existent in both knees and left elbow, for example.*She does on occasion move her tongue in a strange way, but I think that's because of the psych meds.

As you see, we have lots of complicating factors, so I was hoping you kind folks could help arm me with the right questions for the doctor. What are the hallmarks of ALS that we should look for/ask about in the test results? Does anyone here have experience with diabetic amyotrophy, and whether there are any tests that would indicate one or the other diagnosis? Any and all suggestions are welcome.

Thanks in advance for your help and advice!
 

KJCB

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Realizing I was probably too wordy here- sorry. Perhaps I should simply ask: what questions do you wish you'd asked when you or your PALS was first diagnosed?
 

Clearwater AL

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No confirmed diagnosis of ALS has been given yet. So, as of now you're a caregiver but not a caregiver of anyone who has ALS. I'm sure those here who have been diagnosed with ALS will tell you to please pray it may be one of many other possibilities. Be patient, you may not learn much more than you know now at the next appointment. (If I read your post correctly... sometimes I make a mistake too).
 

Nikki J

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It is a little hard to answer as it is not obvious how the appointment will go. If you get a diagnosis then I would ask how certain it is. Are there more tests that should be done? Could it be anything else? Is it possible that the psych meds are still having some effect with her? What about the diabetes? Given all her issues if she has not already can she be hooked up with social services and perhaps vna asap?
It is possible as well there will not be a firm diagnosis in which case you want to know what tests are next, what has been ruled out,what is still on the table and in what direction the doctor is leaning. What can be done in the meantime to help her as she is rapidly getting worse.

Take notes. Ask when and how to follow up

Not sure how helpful this is sorry
 

KJCB

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Thanks to you both for your responses- very helpful, if only to remind us that we may not actually get real answers tomorrow. Patience is hard when you're watching a loved one deteriorate (I'm sure many of you can relate), but obviously we want the right diagnosis and pray that it is not ALS. Thanks again.
 
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