Still worried, confused and grieving...

[VWPGSY]

Dear All

I posted a thread here as "Worried, confused and grieving" back in October 2014, having lost my Dad to ALS aged 61 and subsequently suffering symptoms:

Pins and needles - left arm [sensory, can cope with]
Muscle twitching - left side, constantly (I mean non-stop) on chest muscle (left) and intermittent twitching on left leg and left forearm. [twitching still makes me a bit anxious, despite being told by 2 neuros that it's nothing to be concerned about, despite the fact it's nigh on CONSTANT].

However:

For the past 6 months, I've had no discernible weakness but the last 3 weeks I have now started to feel weak, when doing gym work (on my chest) i.e. I used to be able to do 5 normal push ups, and now I can barely do one, I just collapse on the floor.

I had an EMG about 5 weeks ago (on my left side) which was clean/clear.

Questions, and forgive me if there are obvious from the stickies/other posts I've read:

1. If the EMG ruled out the bad stuff, could my symptoms have progressed in a short period of time to suggest the EMG did not pick up the weakness (from denervation?) that I'm experiencing now?

2. Would the fact my muscles are twitching all the time, cause them to be tired and hence make me weaker (without ALS weakness).

I know when people say "I go to the gym" etc, many respond saying that it's not ALS, but am worried about the onset of weakness, particularly in an area where I twitch constantly. I did have an EMG, but am worried unless they needled a particular muscle - it might not have been picked up?

Any thoughts or experiences appreciated.

 

[Nikki J]

1.no
2. Yes people with known bfs report that

 

[VWPGSY]

Thanks Nikki for your prompt responses. Best wishes.

 

[DalekSec]

As Nikki said, a clean EMG means no LMN damage, hence no ALS. As I can read from you post, it seems that you likely have BFS (or some kind of PNH), and the muscle pain if one of its main symptoms (see Benign fasciculation syndrome - Wikipedia, the free encyclopedia). As you can see from my previous posts, I also have BFS with a lot of pain, so I suggest you switch to BFS forum: AboutBFS.com ? Index page
And yes, even though it can be very annoying, in most majority of cases BFS don't progess into anything sinister. Especially if you are younger than 45.

All the best,
Dalek

 

[VWPGSY]

Many thanks Dalek, I read your December 14 post earlier today with interest re your symptoms and results. It was very good of you to give a follow up email so people knew how it worked out.

My neuro said that because my Dad didn't have any other relatives with ALS/MND, he ruled out a familial concern. The thing about the neuros I saw, neither specifically mentioned BFS, all they did was rule out anything bad, but I am still coming to terms with losing my Dad to the illness, so this doesn't help when I do twitch (which is practically constantly).

The aboutBFS site is great, unfortunately there is an issue where the moderator isn't accepting any new members so I am unable to post on there and share my experiences.

Best wishes.

 

[DalekSec]

Yes, at the moment there are some problems on aboutBFS forum with accepting new members, so unfortunately many new twitchers end up here. I hope they will resolve this problem soon.

Also, you don't need worry if neurologist didn't give you an explicit diagnosis of BFS. The only thing that matters is that the standard tests (blood tests, MRIs, clinical, and EMG) came back clean.

And I am deeply sorry about your dad. Since you mentioned that your dad was the only family member affected with ALS, you don't need to worry about the familial form. Stay strong and hope you join us soon on BFS forum.

Kind regards,
Dalek

 

[VWPGSY]

Thanks Dalek for your kind words.

My Dad passed away quite unexpectedly two days before my wedding, which as you can imagine was quite a shock - we knew he wasn't getting better and the illness was progressing, he was on a breathing machine, probably 50% of the day and always at night time. He was moving between his wheelchair and his chair (whilst my Mum had quickly gone into the kitchen to get him something), he fell, knocked himself out and was too weak to come out the coma.

One thing that gets me anxious is the fact my main twitches are upper body, whereas a lot of BFS twitchers seem to have them on their calves (where I get some, but not a lot). My main twitching is a constant buzz/twitch/vibration on my left chest muscle, which has been there since last November, which is where I get my anxiety from - a lot of BFS twitchers seems to have it less constant than me, but there are a few cases of BFS twitchers I've read that have been twitching constantly for years, which puts me at ease.

Below is a note from my sister's Father-in-Law, a doctor, which helps my anxiety relating to the twitches, not sure what others may make of it, but it makes sense to me, having sat and discussed MND/ALS with him, as well as my "symptoms":

Considering the stress and anxiety you have been through over the last few years with your father, plus the enthusiasm with which you throw yourself into schemes etc I would strongly suspect that your problems are related to sympathetic nervous system overaction. In severe cases this could be described as "living on your nerves" but I don't think that you are any way near that. Basically what happens, if somebody has to push themselves or are stressed for whatever reason (pain, work, overactive lifestyle etc) eventually the body starts to flag. Normally, if we were unthinking "beasts of the field" we would stop what we were doing (unless survival were at stake) and crash out until recovered. However, if life were at stake the body would increase its sympathetic drive. The Sympathetic Nervous System is one half of the so-called "Autonomic Nervous System", so-called because we have no direct control over it. It normally deals with all those back-room jobs like maintaining the correct blood pressure, heart rate, keeping the bowels moving etc etc. However, in this context it is important as being involved in the "fight-or-flight" response. This is the response of the body when faced by imminent destruction. In days of old this was usually when suddenly we were faced by a predator - should you try to run away from it or should you stand and fight it to the death? Whichever you decided the body had already put itself into "fight-or-flight" mode by stimulating the Sympathetic Nervous system - the heart rate goes up, the blood pressure goes up and your airways open up to prepare yourself for the exertion of battle or high speed flight plus your bladder empties probably for less weight to carry ("Ooooh, I had such a fright that I wet meself!) and your bowels empty themselves (".... also I shat meself!) possibly also as a smelly diversion to the predator. Such sympathetic drive will allow you to run a hundred yards and then climb a 50 foot tree in 10secs thus escaping the clutches of the predator - that or your dead meat. Whichever the result the sympathetic surge is over and done with in a matter of moments and the profligate use of energy can be recovered with the absolute rest that comes from being "right knackered".


However, if the sympathetic surge is not one that is over and done with in a few minutes but is one that continues for months or years, albeit at a low level, then eventually the body cannot keep it up and the continuing sympathetic overactivity starts to affect the brain function (amongst other things). The brain works on so-called Neurotransmitters (chemical active in the brain) which relay impulses between nerve cells in the brain. Nor-Adrenaline is one such and it is also one of the chemical produced in sympathetic surges (its brother, Adrenaline, is another one) so it is not surprising that there could be side-effects in the brain from the constantly raised levels in the blood. One thing about the body is that we are not perfectly built. However, evolution has developed corrective mechanisms to take care of most of the problems that our imperfections can cause. One example is that neurons are firing off spontaneously all over the place because they are not a perfect design. Without a corrective mechanism the brain, for instance, would be flooded with messages, many of them contradictory, which would cause it to seize up or malfunction. This doesn't happen because we have what can best be considered as "filters" which screen out all the rubbish but let through the genuine messages. This probably works on the principal that if a million sensors in your finger report that they feel pain then the messages are probably correct. However, if only 1 or 2 do then this is probably rubbish and the messages are disregarded. There is clearly some sort of cut-off point between significant and "can be disregarded". Constant sympathetic drive seems to lower that cut-off point so that the brain starts to receive many more aberrant sensory messages which would otherwise have been filtered out. This could explain some of the sensory problems you experience.


It could also explain the twitching. The mechanism is still the same and that is the constant sympathetic drive lowers the threshold at which neurones will respond to stimuli. That includes motor neurones and means increased aberrant muscle activity anywhere in the body.

Kind regards
VWP