18 Months of BFS: Update

[jeffthefuture]

Hi everyone – hope you are all well. It has been a while since I posted, so a quick update:-31 year old male. Started twitching/fasciculations about 18 months ago. Pretty classic BFS symptoms. EMG/neuro essentially clean (some fasciculations seen). -Full blown anxiety/panic like everyone else, scared about #$%. Lots of ‘checking’ for atrophy, dents, etc…- Symptoms improved but for the past 4 weeks they have come back with a vengeance and my anxiety is very high again. I have recently lost 25lbs of weight purposely through tones of exercise (running) and weight lifting. Minimal alcohol. Some coffee. I am actually now terrified about Huntington’s Disease (even though I know of no one in the family or extended family with it that I know of – although my grandmother died in her 50’s from lung cancer). I have recently been feeling very light headed with almost poor coordination. I hyperventilate a lot with the anxiety. I also find my mood has fluctuated a lot over the past year – I always chalked this up to stress and anxiety from BFS, but now I don’t know. What I am concerned about is that my twitching is actually the start of chorea. I’d appreciate knowing if other’s have similar “BFS” symptoms or if mine is unique:-I have constant, full body twitches/real fasciculations much worst in my legs (especially calves). Some big, some small. -My twitching constantly makes my joints move with sudden jolts – whether shoulders, fingers, feet, whatever. Very sporadic, very similar to tics (last half a second it seems - very random all over). I don’t believe I have shown any signs of chorea but now I’m scared these ‘tics’ are only the beginning. Are these just large fasciculations moving a joint? -I feel very restless and ‘antsy’ all the time, like I always want to be moving. I find it hard to sit perfectly still (but not impossible). Many of my muscles vibrate. I have lots of random alternating muscle/tendon pain with no explanation. Any thoughts or suggestions would be greatly appreciated. Here is just another horrible ‘disease’ I am panicking about (especially as it is hereditary and I have a daughter), so I’d appreciate any support/feedback.

 

[BobJazzy]

Let me put your Huntingtons fears to rest. I have Huntingtons in my family. My grandfather died of it and my uncle and cousin did as well. You CAN NOT get it if your parents don't have it. Impossible. If someone has Huntingtons, then each offspring has a 50% chance of getting it. My grandfather had it and he had 6 kids. Thankfully, only one uncle got it. My uncle had 2 kids and 1 had it. My father was tested and doesn't have it which means that me and my 4 brothers and sisters can not get it either. I've personally seen Huntingtons from the first sign of symptoms all the way through to the end and its NOTHING like BFS. The muscle movements are very different. If your parents don't have it, you don't have it. Period.

 

[jeffthefuture]

Thanks BobJazzy for the quick reply - objectively I know I am being irritional, but my anxiety has the better of me. My mother is 64 and my father is 59 - if either had Huntington's, I imagine most likely it would have presented itself by now?Can you, or anyone else comment on the 'restlessness' symptoms I'm having, as well as what I perceive to be either tics or rather, full joint movements caused by (I hope) large fasciculations rather than small? Is such jerking (small, myoclonic?) like motion normal in BFS? It's like I'm making tones of very small, quick movements all over my body, but there is not really any 'dance-like' pattern to them like in chorea. A lot of the 'movements' I make are difficult for me to tell if they are voluntary or involuntary. They are not noticeable by anyone and I can remain perfectly still if I choose...objectively, I'm wondering a bit if I am suffering from Restless Leg Syndrome (which doesn't have to be only confined to the lower limbs) or psychogenic myoclonus as well as BFS. Of note, my mother has RLS and I have celiac disease (a known association of RLS). Really, what I'd like to know, does anyone else get fasciculations that cause a joint to move slightly (e.g., fingers, wrist, shoulder, foot, etc...)? I think my fasciculations have always caused some joints to move, but I seem to be in a real fasc storm right now so am noticing symptoms a lot more. Thanks!

 

[Gracer]

Hi,as Matt said, Huntington usually manifests latest at 30s (that is why it may be herediatry because before manifestation people usually are married and get a few children already)... and people of Huntington seldom survive their 50s, plus minus, becasue average lifespan after onset is about 15 years, if I do not mess anything.Without family story of Huntington, you may forget about it.Yes sometimes BFSers report myoclonoc-like jerks. But more probably you may have 'shrudding' attacks common for anxiety at which you may have involuntary series of moving, especially in upper limbs and shoulders. Those attacks are usually short and perople report they feel some relief after it. Without seen you alive it is hard to say of course if you have something close to acatisia (almost involuntary inability to sit still, plus feeling of uneasiness, plus sometimes feeling like your muscles are strained or itchy, or joints are tend to strain out) or it is just agitation common for some anxiety syndromes.Do you take any mood correcting meds? Something to keep anxiety controlled? Anything to loose weight (often it contains amphetamines which can cause acatisia)?but anyway, if you feel strange, it is better to see a specialist.