33 years old, weakness, falling

[mrs.eptwa]

Thanks Nikki. The neurologist has no idea what it could be and was so rude to me. He did not explain anything to me about his conclusion, but the whole conclusion says,
"Today's results, as well as those from the 7/23/2015 study of the left arm, suggest a widespread polyneuropathy or neuronopathy. There is no evidence for entrapment neuropathies, peripheral neuropathies, conduction block or a length- dependent pattern to the denervation changes seen."
Above that are findings that say,
"NCV testing of the right median and ulnar motor and sensory, radial and medial and lateral antebrachial cutaneous sensory, and right radial and medial/lateral antebrachial cutaneous sensory nerves reveal normal amplitudes, latencies, conduction velocities and where appropriate F-reflex latencies. EMG examination of the right arm and left leg reveals signs of diffuse acute and chronic denervation in all muscles tested".
And yes, my next stop is a neuromuscular specialist at Virginia Mason in Nov., and they are supposed to be the ALS experts around here.

Thanks for your help

 

[Nikki J]

I am glad you have an appointment and that wait while hard is not unreasonable for this sort of appointment. That said it might be worth calling and seeing if you can befriend the scheduler and ask to be on a cancel list If true, say that you would come any time with x amount of notice. If they say they do not have a cancel list ask if you may check back

You probably already know this but in addition to having your records sent ahead also get copies of everything including the physical MRI discs to take with you plan on taking a companion to the appointment as a second pair of ears and to take notes. Think hard about your questions. Write them down. Think about the possible scenarios and what you would need to know

 

[Atsugi]

Ditto what Nikki said. She's really smart on these things.
I just want to emphasize the notebook. We all forget most of what we hear doctors say, but the time it's important. The team at Virginia Mason should be patient, and help you understand as you write notes for reference later.
--Mike

 

[mrs.eptwa]

Thank you both for your responses. Do you think those findings sound consistent with ALS?

 

[Atsugi]

Thank you both for your responses. Do you think those findings sound consistent with ALS?

Mixed bag.

I totally agree with what Nikki said, "I don't think ALS is the only answer but it is certainly high on the list. I will say though that we have had members who had equally dire findings and were diagnosed as ALS by a local neurologist only to have the diagnosis overturned by the neuromuscular doctor." That's the best answer I think you'll get from anyone, anywhere.


I'm totally not qualified to comment on the EMG. But as to your symptoms:

• · arm felt strange - tingly, pins and needles >> doesn’t sound like ALS.
• · no longer fully extend my index >>> that’s troublesome, could be many things, including ALS.
• · leg was also weak … I kept falling >>> very troublesome, could be many things, including ALS.
• · Hyperreflexic >>> again, could be many things, including ALS.
• · diffuse acute and chronic denervation in all muscles tested >>> several things, including ALS.
• · better get some life insurance quick... rather than after a diagnosis. >>> agreed.
• · pain in arm …harder time making it to the bathroom >>> Not like any ALS I’ve ever heard.

Come back and tell us how it goes and how you're doing.
--Mike

 

[Atsugi]

Mrs E:

The hallmark of ALS is a muscle that is limp, useless, paralyzed without any feelings to explain it, such as feelings of weakness, exhaustion, burning, or some weird sensation. In ALS, a muscle just gets weak and then useless quickly for no apparent reason. You might fall over without explanation.

You see, ALS is a disease in the brain and brain stem, affecting the motor neurons. ALS destroys a motor nerve, so the corresponding muscle never gets any signal to move. The muscle stays limp and useless. Then ALS moves to the next motor nerve and then the next, in serial fashion, until your whole leg is paralyzed. The disease moves up (or down) your body, until your lung muscles don't work anymore. People with ALS die mostly because of breathing problems.

In ALS, both the upper motor neurons in the brain and the lower motor neurons in the brainstem are destroyed, so there is "diffuse, widespread, acute and chronic denervation" on the EMG well in advance of the symptoms showing up in the muscles.

 

[mrs.eptwa]

Thank you for your patience and the thorough explanations, I think I finally got it! Sorry it took so long, and thanks for bearing with me...
Will update in Nov and try to stay away from here in the mean time