Possible ALS

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Sep 30, 2021
Hello everyone my name is Jeff. I'm in the process of being diagnosed - process as in waiting to meet with ALS specialist (Feb 2022!)
This is my story...
- W/M 57yr
- summer 2020: noticed muscles cramping. Thought it was age related so reduced weight training (which wasn't extensive anyway), reduced exercise
- fall 2020: wife noticed my arms were twitching
- late fall 2020: trouble gripping things w/ right hand. Given that I've been doing computer work for 30+ years thought it was carpal tunnel
- spring 2021: finally vaccinated visit my GP. Cramps most likely electrolytes and hand issue most likely ulnar nerve given numbness in pinky+ring finger
- late-spring 2021: slight numbness in right foot when walking the dogs - enough to affect my gait
- summer 2021: follow up w/ GP. "Not what your thinking (ALS)... however to be safe -> neurologist"
- late summer 2021: Neurologist. "Not what your thinking (ALS)... most likely ulnar nerve and pinched nerve in back. No noticeable muscle loss". Ordered full spinal MRI.
- 2 wks later: Insurance denies MRI. Wants EMG first.
- 2 more wks later: EMG conducted
- 1 week later: Full spinal MRI while wearing mask (covid). This was over an hour in MRI machine w/mask on. had to escape at 45 minutes - not going back in with mask on because it is unbearable...finished MRI
- 1 more week later: debrief with Neurologist. MRI is clean, EMG not so clean (showed two abnormalities). Even with her mask on the eyes gave it away - sad. Starting referral to Duke ALS clinic because it may take months to get in. Ordered blood work, urine and if all clean then spinal tap.
- fall 2021: blood clean, urine clean, spinal tap clean. Interestingly, this was communicated via the health portal. No call. "will discuss at next visit in 2wks".
- The diagnosis right now is clinically possible motor neuron disease

That brings us to today. Will meet with neurologist in a week to see about next steps. I also requested a PT referral so I can build a PT baseline with the Duke ALS clinic staff. Emotionally -like most others- this has been a rollercoaster. Now I'm just kind of numb.

To plan ahead we have met with an estate attorney and will meet with a financial planner. I'm still working but not sure for how long.

Q: Given that I don't meet with the ALS specialist until early 2022 what can I take to slow the progression? supplements vs rx?

Q: My disability and life insurance is through work - given annual benefits renewal have others run into issues adjusting their coverage? coverage getting dropped?

Hi Jeff
I am unclear as to whether or not you were actually diagnosed? if you were she should have offered you riluzole and radicava the approved drugs for ALS. Riluzole does not usually require any preauthorization so she could have run a blood test to check your liver and then written a prescription. Radicava is more paper work but still a neurologist can order it.

many of us take various supplements but those are the drugs that are approved

as a general rule if you are signing up for the same work benefits there shouldn’t be any underwriting questions though your work is obviously unique. If you were thinking of adding or increasing coverage though there might be an issue. My work had underwriting questions if increasing life insurance from original choice and I think it is common to have that policy for things like life and disability etc
Hi Jeff, sorry to hear. If you want to post your de-identified EMG, we could be more helpful. "Two abnormalities" is fewer than we would expect to see, depending on what/where they are and what was tested. And even a clean MRI does not rule out any and all spine problems (e.g. one study found only 76% of cervical radiculopathies were detected by MRI), relevant to the extent that numbness is normally more associated with radiculopathies than ALS.

I am surprised you could not get into Duke until Feb. if it was presented to them as a second opinion. With "clinically possible," that's what it should be.

Was this exam/testing done at UNC or somewhere else? If not UNC, did you check there to see if they had a sooner appointment than Duke?

Any medical underwriting that is required to add coverage, as Nikki said, will catch on "clinically possible" whether confirmed or not. Sometimes you can add a little without underwriting kicking in.

If the coverage is an employee benefit, usually they cannot drop you unless you lose employment and then there might be a disability clause. I certainly wouldn't rush into HR with any news as yet.

Thanks everyone for responding so quickly.

The EMG summary said:
"EMG and nerve conduction study on 8/xx/21 showed two abnormalities. First there was evidence of bilateral ulnar neuropathies focal to the elbows. In addition there was evidence of a patchy motor axonopathy with involvement as proximal as the nerve roots involving the right cervical, thoracic and lower lumbosacral myotomes. Differential diagnosis includes anterior horn cell disease, multilevel compressive radiculopathies, inflammatory, infectious, neoplastic or paraneoplastic etiologies."

Testing was all performed in Raleigh by local neurology group.

Regarding diagnosis - my Neurologist may hold off and let Duke ALS (Dr Bedlack) make the official diagnosis. I'll know more next week.

My understanding from the EMG debriefing - pathways/nerves are dying and now we run tests to understand why (blood,urine,spinal tap). These test will identify whether inflammation, cancer, infection, parasite (Lyme disease) is the culprit. If these tests are negative then it leaves ALS.

Do you have the actual tables of results (rows/columns)? From here on, you will want to keep all your own records at hand. Ulnar neuropathy is common but "patchy motor axonopathy" is a pleasantly vague characterization of what the rows/columns may or may not show.

I would really look into UNC rather than waiting till Feb. for Duke unless further testing follows this week's visit. Any <para>neoplastic, inflammatory, and infectious etiologies, for example, would benefit from timely detection. Wake Forest is another option.
Jeff, you may be getting over your skis on those personal matters you want to get
lined up. You will need a confirmed diagnosis with the diagnostic code for ALS
signed off by an ALS specialist. I've read where that was required by insurance
companies, different compensations and benefit programs.
But... looking into what will be required might be helpful too.

And it is very very unusual that a second opinion at Duke would be put off until
February 2022 regardless to COVID 19. I'm familiar with Duke and most Neurological
facilities around Raleigh/Durham are associated with or work closely with Duke.
You may not be seen by Dr. Bedlack himself. Often he is off to conferences here
or around the world. His associate specialists are also the best.

I hope your roller coaster levels off soon, comes to a stop and you can get off...
good or bad.
I realize some people here venerate Duke/Dr. Bedlack, and I'm sure he does much good, but I have known several members who have had good reason not to. So I will only reiterate that everyone in the RTP area has other options, just as everyone on the East Coast and most people in a metro area anywhere typically do. Here is a link to a map of programs.

If the referral was not presented as a second opinion, again, that might have delayed things so I would double-check that it was.

As well, I would not look into any benefit programs unless/until you have a definitive diagnosis. As Al points out, a blank space isn't a diagnosis code, and these are three letters that could have negative effects on how you are viewed, even if your dx turns out another way.
@igleb I uploaded the EMG results (hopefully de-identified)

thank you all for the comments - will hopefully know more later this week from my neurologist.



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