My timeline doesn’t fit but…..

[KevinR]

I posted here about a year or so ago and was told by the forum that I do not have ALS. My VA Dr. Wymer said the same thing just last week. He did say that I had an UMN dysfunction but that because I have very little to none decreased lower and upper weakness and my timeline doesn’t fit the ALS algorithm he would have to defer back to my TBI doctor. Apparently, when he did a DTR assessment my chin was jerking like crazy. So that’s two symptoms of UMN disease that are not subjective. He did say that it could be PLS but that even then the timeline didn’t fit. He also said that it could be FTD as some of those symptoms are similar but that wasn’t his specialty and that he wasn’t qualified to make such a diagnosis.

It is important to note that all my imaging studies have ruled out any lesions or trauma and that I have always had a positive Babinski and extreme spasticity when sleeping and poor balance. As in my original post I was told at 17 by my dad that I had ALS. He said this because his brother committed suicide after being diagnosed and that that I had the same two symptoms as a child. Extreme spastic movements when sleeping and the positive Babinski. When I was 23 I was told by an EMT instructor who was also a doctor that my positive Babinski was a sign of ALS. He was very clear in that that he was not making a diagnosis but did ask how I got in the Army? When I was in an Engineer unit as a medic we went to Iraq. I was working the night shift as they were building roads 24/7. The platoon SSG woke me up during the day because he thought I was having a seizure. I was sent back to my combat support hospital where my doctor found the positive Babinski again.

I can no longer work as a RN because of some severe cognitive changes. Such as anger control, poor judgement, some memory impairment. Any kind of stress at all and good luck getting a sentence out of me. My family often joke that I could be POTUS. I drop something it seems as if 100 times a day. My hand strength is just about gone ( still have my pads)my wife will often have to open bottles/jars and she will testify that it’s not if it’s when I fall as my trunk control is getting to be almost nonexistent it seems. To the point when walking or turning I don’t always stop when doing said movements.

There is an UMN disease that fits my symptoms down to the letter. What or where do I go now? My wife has added me onto her insurance so that I can get a 2nd opinion. Mayo is not an option as they won’t take her insurance. I can go to UF Shands but it’s the same doctor as he just walks across the street.

 

[lgelb]

I am sorry to hear of your issues, but spasticity in sleep is [fortunately] more likely a movement disorder than motor neuron disease, and medication should be able to help.

If your sleep is fragmented secondary to the abnormal movement, that could also contribute to poor balance when awake, as could anemia, etc. so hopefully you are being closely followed by an internist. I am not certain why you are being followed for TBI, but of course post-injury complications aren't always visible on imaging, and you describe some common ones.

A positive Babinski may aid in diagnosis but can have many causes and must be interpreted in a complete clinical context. I do not see a context from what you report that describes MND per se.

Best,
Laurie

 

[KevinR]

I pray that you, they are correct. But let’s look at the statement upper motor neuron dysfunction. Funny how changing one word can alter a whole concept. Yes, the TBI was a MC in 07. Doesn’t explain the positive Babinski at age 23.
Reasons for the babinski
Trauma/lesions to brain or spinal cord
MS
M Gravis
Guillian Barre
UMN disease
My films have ruled out the trauma/lesions.
I’m soon to be 59 and now I have two quantitative DTR reflexes whereas 2 years ago I only had the one. Too be clear it’s not just a babinski it literally causes my knee, hip and shoulder to jerk.
Spastic motion at nighttime during sleep is normal. Tonic clonic jerking is not. I have been an RN for 39 years. 20 of those working nights. I would have seen that. My wife who also is an RN wil tell you what I do IS NOT NORMAL. As I stated I was awoken by a senior NCO who swore I was having a seizure. To the point I was relieved of my post and sent back to my base camp.
To be clear I’m in your park as I don’t want this thing anyway but everything keeps pointing back here.
May I point out that there is a correlation between frontal temporal dementia and ALS with a spike in the behavioral frontal temporal dementia ( there are three kinds).
I can’t hold a job anymore because of my inability to control my emotions. I am inappropriate when angry.
Now I will submit one aspect that most have overlooked. I have been living with this “you have ALS since 17. I have had a great life. College degree, ran a trauma center, three continents. I keep going forward until I can’t go anymore. But could I or my wife be so in tune to my symptoms that maybe a layperson might overlook? I think the most important part of an ALS diagnosis is that it is nearly impossible to diagnose until the symptoms are no longer manageable by the patient and or family. Or more plainly until those neurons actually begin to quit. For some it’s fast for some it’s slow. I have cared for more than one ALS patient in my career so this is speaking from experience. AGAIN, I pray that this is not what I have but… the behavioral FTD along with my other symptoms sure doesn’t leave a whole lot of options.
I just need to find out where to go next not to have a diagnosis given to me online plz.

 

[Nikki J]

I suggest you pursue the ftd There are ftd specialists who can formally diagnose you ( or rule it out). Your neurologist said he could not formally diagnose you which is fair but there are doctors who can. It sounds like the cognitive behavioral symptoms are very debilitating. There is no cure and only treatments that may somewhat mitigate your symptoms but there may be comfort in a diagnosis. The ftd and als doctors are working together more so if that doctor has concern they could help you navigate your healthcare options

early diagnosis by an ALS specialist happens. Delayed diagnosis is most often due to delays in getting there.

we are not here to argue. You believe you have ftd als. We are not seeing it but what matters is your doctors. I am going to close this thread because we are clearly not helping you. I hope you get answers soon.