Positive Babinski with triple flexion

[KevinR]

Hello everyone,

I started having some cognitive issues after a MC. Crash in 07, I

saw a neurologist who wrote suspect CTE or frontal temporal

dementia. I only know this because when I was able to get into the

VA system I read my records. When I saw the VA doc he found the

Babinski. Since then I’ve had an MRI of the brain and spinal cord.

Traumatic brain injury as well as trauma or lesions to the brain an

cord were ruled out. He has since signed off and referred me to a

skeletal muscle doctor. I have my EMG the 2nd of July. I do have

some wasting of muscle on my right upper side but no weakness to

speak of. I have started becoming short of breath with minimal

exertion as well as some aspiration issues. I’m a RN and have been

for almost 30 years and there is part of me that’s praying but I know.

 

[KarenNWendyn]

The life expectancy of people with FTD is similar to that of ALS: 3-5 years. So if you started having cognitive issues in ‘07, I think you can take FTD off the table.

The Babinski is probably either related to the head trauma (MRIs don’t always show everything) or is an isolated finding of no significance.

Let us know how your EMG turns out, but I wouldn’t worry about ALS.

 

[Clearwater AL]

Symptoms of frontal temporal dementia progress at a steady rate. Patients suffering from the
disease can survive for 2–20 years. Eventually patients will need 24-hour care for daily function.

At the end of your last sentence you implied... "but I know."

Don't go there until you have your EMG. Like Karen wrote... I wouldn't worry about ALS.

 

[KarenNWendyn]

Just to clarify regarding the life expectancy of someone with FTD, I pulled this from an online medical textbook “UpToDate”:

“FTD has a younger age of onset and appears to progress more rapidly than Alzheimer disease (AD) [60-62]. Survival from symptom onset is approximately 8 to 10 years and is often shorter in patients with the behavioral variant of FTD (bvFTD) than those with primary progressive aphasia [63-69]. Patients with bvFTD with motor neuron disease have the shortest disease duration of approximately two years [60,64].”

 

[Clearwater AL]

I also found what I posted from a medical website.... even medical web sites may
have differing opinions.

Just as the old 3 to 5 year prognosis for ALS seems to outdated just with the number
of slow progressing members on this Forum. Thank goodness.

 

[KevinR]

EMG test was negative. Some weakness in dominant hand but negative. Swallow study showed I’m pocketing food. Doctor said my tongue was weak. Said that’s normal for my age. IDK about that statement. Cognitive wise the Wellbutrin and neurontin and therapy has helped me sleep better and I was average to above average with language test. Speech test had one stocking point but otherwise normal.

Here’s my concern. I only met my real dad once and I was 17 at the time. He told me I had ALS, his brother had it and I had it too. He said just ask my grandmother (she was a nurse) she did the foot test and it was positive. And yes, she did confirm. So now what do I do with that?

Is it normal for the tongue to just become weak? Even though I passed my speech, I still slur words as the day gets longer. I saw where someone posted a ALS/FTD topic am I looking at both?

 

[lgelb]

Congrats on the negative EMG. As for the meeting with your dad, what do you do with that? Nothing. There is no "foot test" that diagnoses ALS, least of all as far back as that would be, with no major progression from then to now. That's not ALS.

Try drinking non-alcoholic drinks throughout the day, a better lip balm, a throat spray at night, and maybe a multivitamin. There are a variety of reasons your tongue can tie itself up.

If it gets worse when you're tired, I'm guessing that absent any diagnosis that explains it, you're already not at your best when you get up, whether from sleep apnea, poor sleep schedule/conditions, mild dehydration/nutritional imbalances, depression, etc. So those are all possible issues to consider one by one.

You can record/video yourself sleeping and if you see/hear excessive repetitive movements, gasping, choking, breathing that starts/stops, those would be indications for a sleep study, or tweaking your rx, even though you say you're sleeping better.

Best,
Laurie

 

[KevinR]

« Foot test ». I used his words. He and my grandmother were referring to the Babinski being positive after age two. I spoke with her at length afterwards. I have been living with this since 17. Do not drink alcohol and haven’t in decades. More than once my wife has asked me have I been drinking or to repeat what I just said within the last few months. I will add it’s not just Babinski it’s the triple flexion. Weak tongue without signs of stroke, tumor or lesion? If all present different and they do then I can only wait and if I do have it then I can only wait. Like I said 17 and I just turned 57.

 

[KimT]

As far as slurring words, when my mouth gets dry, I do. After I have a large glass of H2O it goes away. When I was first diagnosed (my EMG was classic for ALS) I was convinced I had tongue issues. The swallow test was normal and they even did an EMG to my SCM which showed no fibrillations or PSWs.

I also had a TBI from a fall while running. I had cognitive issues as well but, with lots of brain training from a neuropsychologist, I gained most of what I lost back.

How old was your father and grandmother when they died? Cause of death?

Congratulations on the clean EMG. I would do what Laurie suggests.