Do I need more info or what do I do first and Moore Balance Brace?

[Cary1340]

I previously posted that I thought the doctors could be wrong, apparently, they were not. Diagnosed with ALS per clinical exam only and sent for EMG afterwards to determine if PLS vs ALS, it was confirmed that it was ALS last week. At the appointment we asked if my symptoms could be caused by the fall I had in 11/2023 (Post Concussion Syndrome), the neurologist stated that everything could be related to that except it wouldn't explain the bulbar symptoms, At the time we did not know that I did have a spinal compression fracture which had healed, it could have come from any number of falls, between 11/2023 and 09/2024, I guessing the 09/2024 because that was twist and pop injury, since I didn't have any insurance at the time, I self treated and in about 8 weeks I was able to move again. Funny thing is, that neither of the neurologists addressed that injury until I explained it again, neither did my primary doctor. It didn't cause anyone to do additional tests, MRI's but told me we would discuss after the EMG. A second opinion (technically third) doctor also said ALS without the EMG, she was a bit scattered so I am not sure what to think about her.

At the EMG in SF, I fell and bruised my rib cage in the bathroom, they were going to cancel the EMG but since I lived 4 hours away and it took months to get the EMG, they let me do it and i went to the ER the next day. In the ER we discovered that I had a compression fracture on T12, this can cause bulbar symptoms from what I have ascertained, please correct me if i am wrong, I suspect I also have a lower spinal cord compression but since my co pays are so high, I would just be paying for them out of pocket, so I will wait until I have spoken to the neurologist next week via telehealth at 8AM, the only visit I could get that wasn't 3 months out.

The first thing I did was contact Social Security, I am getting early retirement at a reduced rate but can switch to full retirement due to the diagnosis of ALS once they approve it, and get Medicare sooner.

So what are the next things I should do, as far as setting up equipment, care, home modification, (I prepaid my cremation years ago).

I just got my AFO's the Moore Balance Brace, I'm not sure how they will help other than to make me more steady when using the walkers and I am not sure which shoes are best, the ones I have are difficult and not very functional or sturdy, I did buy New Balance at the urging of the poiatrist but there must be something better.

What does palliative care do,?

First symptoms were drop foot but bulbar is predominantly the word I hear when speaking to the neurologist?

I really am at a loss, for direction.

 

[lgelb]

From what you said earlier, your bulbar symptoms were improving, unless there are ones that were not? Anyway, a T12 fracture would not relate to bulbar issues -- it supports movement and sensation further down on the back/abdomen.

If you could post the de-identified EMG, we might be more helpful. Also, I would urge a second opinion at a different center for anyone, but certainly for you since your history is complex. Did that happen? You mention multiple docs but not sure at how many hospitals. Visiting a second clinic also allows you to choose which one you prefer for ongoing care, if the dx is confirmed.

Also, have you been evaluated for osteoporosis?

Palliative care is the concept of what care is like when you are no longer striving for a cure -- to be more comfortable with symptoms. It is most often applied to cancer, where most forms are treatable at least for a while. There is no cure and no remission for ALS, so for me, palliative care is more of an abstraction than a different type of care in ALS, even where it's packaged as a program. Any care team and P/CALS can apply the concept -- living as well as you can until you can't.

Things to think about early include legal paperwork like a Will and Advance Directive, along with a Healthcare Power of Attorney in case you are unable to make/communicate medical decisions. You might also start evaluating your home for wheelchair access and options for moving or renovating if it's not. Since ALS doesn't last forever, some people move closer to family or in with family, or family moves in with them, or some subgroup moves to a different place, even if temporarily as a rental.

New Balance and other global athletic brands' build quality has deteriorated in recent years. A few brands to look at, though not all models are created equal and I don't know your gender/feet, include Drew, Propet, OrthoFeet, Vionic, Rockport, Ecco, Dansko, Asolo, and Ryka. How well any pair of shoes provides good traction as well as ankle support for you personally is more important than a lot of other factors. Get shoes where you can make easy returns.

 

[Nikki J]

I have had good luck with orthofeet ( and have found my afo incredibly helpful). Orthofeet is expensive but they have sales all the time 25-35% off Do not pay full price. They have a good return policy too

 

[Cary1340]

Thank you, I did say that earlier, but it changed rapidly. I'll pull up the EMG once I get to my computer.

 

[Cary1340]

Here is what it says on the EMG. computer is whacky right now so it is copy and paste and hopefully no identifying info.

I did get a second opinion, from outside either clinic, she diagnosed me ALS too without an EMG, I have no idea if I was tested for Osteoporosis, possibly, I haven't been to doctors in about 15 years and nowI have seen more than in my entire lifetime, I have always been healthy and never have taken any medications.

Physical Examination: 64-year-old woman referred herefrom the UCSF ALS clinic by for evaluation ofPLS vs ALS.

Her neurologic exam is pertinentfor spastic dysarthria, tongue fasciculations, left > right splithand, and weakness (R/L) of finger abduction 4/4-, thumbabductors 3-/1, hip flexors 4/4, ankle dorsiflexors 1-2/0,plantar flexors 2/1, everters 2/1, and inverters 3/2. Jaw jerk+,Reflexes 0 at the ankles but 3 in the biceps/brachioradialis andknees, Hoffman brisk bilaterally, right toe upgoing, left toemute. Light touch intact throughout.Procedure: Nerve conduction studies of the left median, ulnar,radial, sural, and superficial peroneal sensory, left median,ulnar, peroneal, and tibial motor nerves were performed withsurface electrodes. EMG studies of the left lower and upperextremities and left mid-thoracic paraspinals were performed withconcentric needle electrodes.Findings:NCS:Left median SNAP showed prolonged peak latency.Left ulnar SNAP was absent.Rest of the SNAPs were normal.Left ulnar CMAP showed low amplitude and slowing across theelbow.Rest of the CMAPs were absent.Left ulnar F wave was absent.NEE:Left tibialis anterior showed frequent fibrillation potentialsand positive sharp waves, and no mups.Left medial gastrocnemius showed frequent fibrillation potentialsand positive sharp waves, and a single mup consistent withseverely reduced recruitment.Left vastus lateralis showed frequent fibrillation potentials andpositive sharp waves, and just 2 long duration mups consistentwith severely reduced recruitment.Left semitendinosus showed fibrillation potentials and positivesharp waves, CRDs, and large amplitude, long-duration, polyphasicMUAPs with moderately reduced recruitment.Left TFL showed frequent fibrillation potentials and positivesharp waves, CRDs, and large amplitude, long-duration MUAPs withseverely reduced recruitment.Left FDI showed very frequent fibrillation potentials andpositive sharp waves, few fasciculations, and a single MUP.Left pronator teres and biceps showed fibrillation potentials andpositive sharp waves, long-duration, polyphasic MUAPs with mildlyreduced recruitment.Left triceps showed fast-firing long-duration MUAPs with mildlyreduced recruitment.Left deltoid showed few fasciculations, and many polyphasic MUAPswith mildly reduced recruitment.Left genioglossus showed fast-firing MUAPs with CRDs, andrelatively large amplitude.Left mid-thoracic paraspinal showed polyphasic MUAPs.Impression:There is electrodiagnostic evidence for diffuse activedenervation and chronic reinnervation in the left cervical andlumbar myotomes, and chronic reinnervation only in the leftgenioglossus consistent with the clinical diagnosis of motorneuron disease. The extensive electrodiagnostic abnormalitiesconfirm lower motor neuron dysfunction, which aligns with ALSrather than PLS as clinically queried.There is electrodiagnostic evidence for a superimposed leftmedian neuropathy at the wrist, and left ulnar neuropathy acrossthe elbow, although severity cannot be accurately characterizedin the presence of #1.Swathy Chandrashekhar, MDAssistant ProfessorNeuromuscular DivisionUCSF Department of NeurologySNCNerve / Sites Rec. Site Onset Lat Peak Lat NP Amp SegmentsDistance Peak Diff Velocity Temp. Stim. Durms ms µV mm ms m/s °C msL Median - Digit II (Antidromic)Wrist Dig II 3.3 4.0 30.5 Wrist - Dig II 140 43 37.6 0.1L Ulnar - Digit V (Antidromic) 140 mmWrist Dig V NR NR NR Wrist - Dig V 140 NR 36.6 0.2A.Elbow - Wrist NRL Radial - Anatomical snuff box (Forearm) 100 mmForearm Wrist 1.8 2.4 26.9 Forearm - Wrist 100 56 35.6 0.1L Sural - Ankle (Calf)Calf Ankle 3.2 4.1 6.2 Calf - Ankle 140 44 31.9 0.1L Superficial peroneal - Ankle 120 mmLat leg Ankle 2.4 3.2 6.2 Lat leg - Ankle 120 51 30.3 0.1MNCNerve / Sites Muscle Latency Amplitude Rel Amp Duration AreaSegments Distance Lat Diff Velocity Temp.ms mV % ms mVms mm ms m/s °CL Median - APBWrist APB NR NR NR NR NR Wrist - APB 80 38.1Elbow APB NR NR NR NR NR Elbow - Wrist NR 37.1L Ulnar - ADMWrist ADM 2.9 3.1 100 5.7 8.1 Wrist - ADM 80 35.8B.Elbow ADM 5.1 2.7 85 6.3 7.7 B.Elbow - Wrist 150 2.2 68 35.8A.Elbow ADM 7.5 2.4 88.9 6.9 7.3 A.Elbow - B.Elbow 100 2.4 4235.7L Peroneal - EDBAnkle EDB NR NR NR NR NR Ankle - EDB 80 30.7L Peroneal - Tib AntFib Head Tib Ant NR NR NR NR NR Fib Head - Tib Ant 32.6L Tibial - AHAnkle AH NR NR NR NR NR Ankle - AH 80 31.1L Ulnar - ADM Inching-5 cm ADM 5.1 2.7 100 6.5 7.8 -5 cm - ADM 35.4-2.5 cm ADM 5.5 2.5 93.6 6.8 7.7 -2.5 cm - -5 cm 25 0.4 6735.30 ADM 6.3 2.5 97.3 6.7 7.6 0 - -2.5 cm 25 0.8 32 35.22.5 cm ADM 7.0 2.3 94.1 6.9 7.3 2.5 cm - 0 25 0.7 35 35.25 cm ADM 7.5 2.3 101 6.9 7.1 5 cm - 2.5 cm 25 0.5 50 35.27.5 cm ADM 8.0 2.3 98.2 7.0 7.2 7.5 cm - 5 cm 25 0.4 57 35F WaveNerve F Lat M Latms msL Ulnar - ADM NR NREMG Summary TableSpontaneous Volitional MUAPs Max Vol Act -Muscle Fib/PSW Fasc Dur. Amp Poly Recruit Interference Max FreqCommentsL. Tibialis anterior 2+ None no mups; crdL. Gastrocnemius (Medial head) 2+ None Normal Normal None Sev redFull 40 Hz single mupL. Vastus lateralis 2+ None 14-20 Normal None Sev red Full 40 Hz2 mupsL. Semitendinosus 1+ None 14-20 0.8-2.2 Many Mod red Full 40 HzCRDsL. Tensor fasciae latae 2+ None 14-20 1-3 None Sev red Full 40 HzL. First dorsal interosseous 3+ Few Normal Normal None Sev redFull 40 Hz single mup; crampL. Pronator teres 1+ None 12-16 Normal Rare Mild red Full 40 HzL. Biceps brachii 1+ None 12-18 Normal Many Mild red Full 40 HzL. Triceps brachii None None 14-20 Normal None Mild red Full 40Hz ffL. Deltoid None Few Normal Normal Many Mild red Full 40 HzL. Genioglossus None None Normal 1.0-2.0 None Mild red Full 40 Hzff; CRDL. Thoracic paraspinals (mid) None None Normal Normal Many NormalFull 40 Hz

 

[Chela]

I have found the SKASO barefoot tennis shoe from amazon to work very well with my foot brace. The zipper makes it easier to put on and the wide foot print is comfortable. For 27$ they are quite affordable a since I am no longer jogging or walking great distances they are plenty suitable for my needs.