Concerned About Evolving Symptoms

[belias407]

Thank you to anyone taking the time to read and respond to this. I know most on this forum are by no fault of their own, fighting a most courageous battle. I truly hope and believe that some of the prospective treatments will be effective and accelerated to all.

For the sake of context and background, my biological father passed from ALS in 2012, at the age of 57, 5 years after being diagnosed. I did not know him personally, and only learned of this later. I did hear any interview he did a couple years into his fight, where he noted specifically that his first symptoms was leg twitching. After it persisted for quite some time, he saw a neurologist, had an EMG, and was then diagnosed. It appeared that he didn't have weakness up through the time of his diagnosis. It doesn't appear that there was any previous family history, but I don't actually know the family history aside what I can ascertain from the internet.

I'm a 35 y.o. male, athletic, though not recently because of symptoms. My situation started 2 months ago. I woke up feeling dramatically "off", stiff, and with on/off significant lower back pain. Almost immediately I developed twitching, starting in my left leg. Over about a week, it had spread bodywide, although primarily and most consistently affecting my legs and mostly after any use. About 2 weeks in, I began having "perceived weakness" and stiffness in the left leg(I did and still have normal strength). After about a month of the first symptoms, I saw a neurologist, who noted that he didn't think it was ALS, as he found no clinical evidence, but did have one patient that had presented like this in the past(with family history). I had an EMG done 2 weeks ago, left leg/arm/back, because of the noted issues with the left leg. The only EMG finding was peripheral nerve hyperexcitability during the "Cramp Fasciculation Protocol", but nothing indicating MND.

Since maybe a few days before the EMG(2 1/2 weeks ago), I started to develop slight cramping, mainly in my leg muscles. In the past week or so, however, the cramping has ramped up significantly. I was put on gabapentin because of how the twitching was affecting sleep, etc. I am up to 300mg 3x/day, and the twitching is somewhat reduced, however, the cramping continues to worsen. Every move I make can elicit a cramp in some part of my body. Most frustrating are those in my abdomen/forearms/feet, especially while sleeping. A majority of the cramping is on the right side of my body, and now I am developing stiffness and "weakness" in my right arm. It's hard to pinpoint if it's due to the cramping or just in addition.

I have read the stickies, and most everything else on the internet pertaining to this, and couldn't be more confident in the abilities of the medical team I am seeing to figure this out. I know there is a more than decent chance that it could be a benign version of "Cramp-Fasciculation Syndrome", but can't seem to mentally separate the onset of my father's symptoms and mine, and the conincidence it would be. However, I know it's extremely rare to have either of these two diagnoses regardless. My question, is does anyone else know of a situation of MND that started like this, with a hyperexcitability phase before symptoms? Specifically the progression of twitching and increasingly severe cramping, in the absence of abnormal EMG/or weakness? It seems from what I've read, there can be increased variability in the onset of FALS.

Thank you again for any insight.

 

[KarenNWendyn]

Please read this if you have not already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

I’m sorry about the loss of your father. His death from ALS likely put the notion of that diagnosis foremost in your mind. In cases of familial ALS, affected persons usually are diagnosed at about the same age.

A benign cramp/ fasciculations syndrome is far more common than ALS. ALS does not usually begin with twitching. In instances when it does, the twitching is more likely to be localized rather than body-wide. Twitching in the absence of clinical weakness and muscle function failure is generally not ALS. Even the people who appear to have twitching as their initial ALS manifestation often have clinical weakness detected on exam that they may not have known about. That’s because weakness in ALS doesn’t have a feel to it. The muscles don’t get the signal to contract through the nerves, but they don’t “feel” weak. And the EMG would be expected to show characteristic abnormalities in ALS, even in cases where twitching is the initial symptom.

So your clean EMG clears you of ALS. Keep in mind that anxiety can make twitching worse. Reevaluate your sleep and hydration. Keep working with your doctors, but you’re in the wrong place here.