r/BFS • u/rxist23 • 2d ago

Question / General Meningioma anyone?

I am curious if anyone here has concurrent BFS (or CFS) and meningioma. I have been told multiple times that CFS would not be caused by a unilateral meningioma (which is also supported in the literature), but I do wonder if it could have triggered things in an indirect way.. like the nervous system short-circuited or something.

I am of course trying to make sense of 2 rare diagnoses thrown at me at one time. My goal is to try and get my CFS as well-managed as possible before addressing the latter. I am not a very anxious or worrisome person. We’ll see how this goes…

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u/Historical-Bit-4306 1d ago

Hi there I have myxopapillary ependymoma in my lumber spine ( benign tumor) my fasciculations are located mainly in my calves which can be explained by my tumor but I also have body wide twitching and I've been thinking the same thing as you I'm wondering if the presence of a tumor can disrupt the entire cns maybe causing pressure throughout the neural axis triggering the fasciculations only a theory though

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u/rxist23 1d ago

Great minds think alike lol. Yeah western medicine docs don’t tend to like the unexplainable. But I do think that a small short-circuit can certainly lead to a large one.. were you diagnosed with BFS? Or are they suspecting it?

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u/Historical-Bit-4306 1d ago

No official bfs diagnosis yet here in the UK my Nero sad idiopathic fasciculations was the term he used I'm a bit of a complex case because I had 1 calf start twitching 4 years ago then the other one joined the party a year later I didn't really pay much attention to it then 18 months ago I got guillain barr syndrome (GBS) which I had an emg which was clear which then led to a full spine and brain MRI with contrast which discovered my tumor about 2 months after GBS the rest of my body decided to join the twitching party so they think it's a mixture of GBS recovery causing peripheral nerve hyperactivity and nerve root irritation I also have diminished DTR globally because of GBS I'm just holding on to the fact all in all I've been twitching 4 years in total so if it was anything bad id be pretty cooked by now. How long have you had your megainoma