Seeking Input on Navigating My Diagnostic Process

[FallingLots]

Have been falling frequently for the past 37 days, falling without warning, severe falls - often on face - when right leg seems to fumble. Suffer horrible cramping of legs periodically day and night. Increasing feeling of generalized weakness - first in right leg and now also in left leg and right arm. Consulted neurologist who referred me for EMG and nerve conduction studies which were done today. The studies showed no myopathy, but there was abnormal nerve conduction noted in both legs - though not a lot of it - with each leg having one really bad nerve along with other lesser ones. Neurologist downplayed the abnormal nerve conduction because there wasn't a lot of it. Won't be able to meet with my referring neurologist until three weeks from now! So am asking the following:

My question: Did any of you here - diagnosed with ALS - early on have "only a little bit of abnormal reduced nerve conduction" in the limbs evaluated on your initial EMS/nerve conduction studies?? Seems like in the early stages of ALS, there would only be a few abnormal nonconducting nerves because most of the muscles at that time are still functioning so the nerves would still be actively directing them. Thanks for your input!

 

[Nikki J]

If you had abnormalities in the nerve conduction ( ncs) portion of the test that points away from ALS. The abnormalities ofALS are seen in the emg portion of the exam.

if you wish to get the report and post a deidentified copy we would be happy to look at it but from what you report you are looking at a completely different issue

 

[KarenNWendyn]

Yes, I would like to see your EMG if you are able to post it.

Are you able to rise up on your toes and onto heels? Did the neurologist find any weakness on your physical exam? Do you have any sensations of numbness or tingling or burning in your feet? How old are you? Any history of diabetes?

 

[FallingLots]

Dear Nikki and Karen,

Thank you so much for your rapid responses! You gave me hope that it wasn't ALS! Sorry for this delayed response back to you. Was waiting for my EMG/NCS test results. Finally saw my neuro yesterday - and you were right on target! My EMG test (bilateral lower extremities) was said to be "normal with no evidence of a myopathy" - so it isn't ALS! And, yes, I can still walk on my heels and toes - just precariously and not for long!
My nerve conduction test was abnormal showing slowing and decreased strength of nerve impulses "most consistent with an axonal neuropathy through the temporal dispersion, particularly of the tibial motor responses, which could support a demyelinating component." They sent labs investigating the possibility that it could be multiple myeloma causing this peripheral neuropathy. Meanwhile I'm using a four-wheel walker and haven't fallen in three weeks! Hurray!
I do have one last question : During the EMG, once when I contracted a certain leg muscle, there was almost no static heard - compared to the other muscles tested - so the doctor turned up the volume trying to hear more and there was still little-to-no static. That wasn't mentioned in the EMG report. Do any of you know perhaps why one muscle would not present the same loud static all the other muscles did in the EMG testing? It was odd. Did any of you have that happen on your EMGs??
I thank all of you PALS and CALS here for your kind generosity in sharing your knowledge of ALS with we who are so afraid we might have this horrible affliction! May an effective cure for ALS be discovered soon - in time to save all of you! I will pray for a timely cure for ALS!

 

[FallingLots]

Yes, I would like to see your EMG if you are able to post it.

Are you able to rise up on your toes and onto heels? Did the neurologist find any weakness on your physical exam? Do you have any sensations of numbness or tingling or burning in your feet? How old are you? Any history of diabetes?

Karen, in my above response to you and Nikki, I forgot to answer all your questions. Can very briefly rise up on toes - heels are tougher to do - but very briefly can. Weakness found in legs. Numbness always in feet and also sometimes burning. No diabetes. They're thinking I now have peripheral neuropathy. On CPAP and oxygen at night. Thanks for your quick reply to my questions!

 

[KarenNWendyn]

During the EMG, once when I contracted a certain leg muscle, there was almost no static heard - compared to the other muscles tested - so the doctor turned up the volume trying to hear more and there was still little-to-no static. That wasn't mentioned in the EMG report. Do any of you know perhaps why one muscle would not present the same loud static all the other muscles did in the EMG testing?

If the EMG was read out as normal, then this wouldn’t be significant.