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Need answers to some symptoms please help

PostPosted: July 7th, 2015, 4:56 am
by Tb12
Hey guys,

31 year old male here who has had symptoms for 3.5 years now ongoing with zero answers and a few scares like chronic denervation findings on first emg but then the last 4 have been completely clean so I'm not sure if the first emg was done incompetent, the dr was absolutely arrogant and ignorant.

My questions of concern are this

Does anyone have twitches in one spot constantly 24/7 for months and months on end?

A tightness or perceived tightness in a muscle for months and months on end? As my left calf and foot have felt weird and tighter than my other side for so long now and it gets cold and painful.

I get really weird cold painful hands which is new and wasn't always a symptom of mine, are these normal symptoms of bfs? I have not been diagnosed as I don't think BFS is known much here in AUstralia.

I also have twitches constantly firing in my knees?

Just curious if these are sounding of bfs symptoms?

Any info would help


Re: Need answers to some symptoms please help

PostPosted: July 7th, 2015, 6:13 am
by Yuliasir
Hi Trent,
cold limbs are symptom of circulatory issues most probably. Ishemia od course causes pain as your muscles do not have enough oxygen to function.
Had you ever checked your veins and small peripheral arterias status?

3.5 years without any loss of motion and with 4 normal EMG are definitely pointing out from MND.

Re: Need answers to some symptoms please help

PostPosted: July 7th, 2015, 6:22 am
by Tb12
Hi Y,
No I have not, what kind of dr should I see for that?

Re: Need answers to some symptoms please help

PostPosted: July 7th, 2015, 7:43 am
by Yuliasir
general doctor for referral I think and flebologist or any other vascular specialist. Usually Doppler US is recommended to see flow level in your legs and hands veins etc.

Re: Need answers to some symptoms please help

PostPosted: July 8th, 2015, 9:44 am
by sanje77
Hi there,

I also had chronic denervation in all tested muscles during my last EMG. Very unsettling, yet I have been told no ALS, as no spontaneous activity was seen, plus my clinical was within normal limits.. The fact that your last EMG's were all normal is more than reassuring! It means that whatever was causing the denervation (old injury, infection etc) has healed.
I've had 24/7 twitches for 9 months now, they haven't stopped for a second in my feet!! I also had the knee twitches, pretty much constant for 2 months before they just subsided. They hang around for quite a while in different places with me. Currently it's my right eye (4 weeks and counting) and my abdomen (3 months). As far as I understand, in BFS it is quite common to have these hotspots. Some people have them more sporadic (lucky bastards) than others (me), there's no rule to this annoying little syndrome. Since you've had symptoms for so long, I think you can definitely relax.
Oh and I also have a flebologist appointment next week to get my veins checked.. I get pains in my hands and right ankle.
All the best to you.

Re: Need answers to some symptoms please help

PostPosted: July 8th, 2015, 8:48 pm
by Tb12
Hi S.
I actually read your posts and I felt a sigh of relief that someone has gone through what I did in terms of chronic denervation, I had no spontaneous activity either so it seems we had very similar emg findings. I know how daunting and scary that must have been and most likely still is but it goes to show there is a lot more of a diagnosis process then just some denervation...

So what's your story to this date? Have you found any answers to anything? What are your symptoms?

Re: Need answers to some symptoms please help

PostPosted: July 10th, 2015, 4:18 am
by sanje77
Hey, yes I agree that it's always a relief to hear that someone else has had similar experiences (especially regarding EMG findings!) with no scary diagnosis. It is unsettling though and so hard to let go of the fears. I have good days and bad days in terms of worrying. No good days in terms of symptoms unfortunately. They have been going on for a good 9-10 months now! Started with fasciculations in my feet, they haven't stopped since. I get maybe 5-10 minutes of not feeling any twitches sometimes if I'm lucky, but mostly they are non-stop. Other twitches I've had pretty much everywhere, always hanging around in a hotspot for a few weeks. Within the last week, I have been getting them around my lips which has kicked off a new scare for me, even though I should really be used to it by now. Other symptoms are:
- burning, sore tongue feeing
- problems with right ankle (been sore for about 7 months)
- light cramps pains in legs
- sore right arm
- perceived thumb weakness
- thenar atrophy!! (Doctors think I might have this because of a broken thumb/wrist I had as a child)
A few symptoms i've had along the way have subsided, such as the feeling that food was painfully getting stuck in my throat, breathing issues etc... Never had those again in the last few months, which to me is very reassuring!

I've had several EMG's, first one normal, second one normal, third one showed chronic denervation in hand muscle, fourth EMG normal, fifth one catastrophic (to me), as chronic denervation showed in all tested muscles (hands, arm, legs, shoulder)! Each EMG was performed by a different neurologist, so I've been wondering if some had been conducted a bit had-heartedly. Who knows. I'm having a follow-up one in a month and am extremely nervous about it. The important thing I took with me from that appointment that 3 neuros and the head of neurology at the hospital I was at assured me that spontaneous activity is definitely to be expected if it was in fact A..
Other than the bad emg, high protein was found in my liquor. Reflexes lively but not brisk, thumb a little weak apparently, but then again it's my non-dominant hand.. All in all no neuro has suspected anything nasty. I've had 2 hospital stays with extensive testing and have tried out many different neuros. At my last EMG the possibility of a polyradiculopathy with benign fasciculations was suggested...
Yesterday I had my flebologist appointment, all was normal. Awaiting MRI results of my right ankle, I really hope it shows something fixable.

So that's my story so far. If all turns out to be ok I'm hoping not to visit any doctors for a long, long time!!!
Sorry this turned out to be a bit wordy... I have been trying not to annoy people so much anymore with my health issues, which seem quite abstract to most people.

How are you doing and what are your symptoms/diagnostic experiences? I replied to your PM too, up to you if you want to PM or chat here.

All the best, Sanje

Re: Need answers to some symptoms please help

PostPosted: July 10th, 2015, 4:25 am
by sanje77
Oh and also, I saw that you mentioned that your left calf has felt tighter for a while. I actually have the same in my left leg!