Well those of you who have kindly offered me words of encouragement (special thanks to Kit and HighPriority) won't be surprised to learn that I got the all clear from my neurologist today. I am 9 months into my BFS. I saw the neurologist initially 6 months ago and also had a normal EMG at this stage. She reassured me then too. I instigated the follow up appointment on the basis of new symptoms (e.g. R leg stiffness ?UMN cause; L hand fascicualtions even on tensing muscle).After taking a thorough history and conducting a detailed examination today, she declared that my new symptoms are of no sinister consequence and I remain at no greater risk of developing ALS than anyone else in the population. She was clear in acknowledging that I need to really get a handle on my anxiety in order to move on. I could have saved myself her fee (which I would have paid 10 times over in order to be given the all clear) by just listening to what you lot have been telling me for months!!Being a doc myself, I probed her in some detail about the fact that fasciculations can occasionally precede weakness in ALS and about the case reports in the medical journals of people with fasciculations and normal EMGs going on to develop ALS. I made specific reference to familial/ hereditary ALS in this regard. In summary her message was that fasciculations precede weakness in ALS in a small number of cases only and that, by and large, the EMG would be abnormal in these patients. The very occasional patient in whom the EMG was normal initially would be expected to have some manifestation of ALS within 6 months. These would usually be obvious to the patient but, even if not, a neurologist would find some abnormality on examination within 6 months. The case reports were of people who were not followed up 6 months later but who went back to the doctor when symptoms developed some time after that (but not much longer than 6 months). This information applies equally to familial as to sporadic ALS.So in summary, if you have had a check up from a neurologist and everything is ok then you shouldn't worry. If your neurologist has arranged for you to have an EMG and this EMG is normal, then you really shouldn't worry. If 6 months has elapsed since this time and you are not weak, you really really shouldn't worry. If you have had a further review by a neurologist at this point and all is well then you really really really shouldn't worry. This applies to people who have a family history of ALS too.Final words, anxiety is the enemy, not the twitching (in my case at least!)CheersSimon
BFS All Clear After 9 Months!
- Thread starter simonw00
- Start date
FantasticFurball
Well-known member
Nah, SimonHavent you heard the story of the guy who () and then () and in the end ()? And that was AFTER () and then () and afterwards ()...! 
) 
) Gday SimonCongratulations on the good news. I myself am experiencing proggressive leg stiffness and parasthesias/awkwardness in my right leg, which as you know has been present over the last 11 months. Initially it was just a sensation of awkwardness, then it became painful/stiff when driving, now Im experiencing pain/cramp in both my anterior and posterior leg musculature R/leh only, which is significantly impeding my ability to walk. I have had fasics along common nerve roots in the affected leg (and right arm) increasingly over the last month (I wonder if anyone else have experienced fasics over time in a limb along same nerve root), and also have a sensation I would describe as burning/pressure which is uncomfortable at rest and constant. The 3 clean EMG's over the last 11 months are doing nothing to salve the anxiety of these progressive symptoms. Most people on this forum describe migrating/temporary symptoms, mine have stayed in the same place over 11 months and have slowly become more debilitating. I have also lost 4 KG over the last 2 months. Im sorry to take the shine off of your relief but our symtoms somewhat mirrored each other, so I thought it pertinant to report my situation and ask for your opinion.RegardsMarty
EyeoftheWild
Well-known member
Awesome news, Simon. Why not peace out for a while. Eat some lamb, do some Maori chanting, ride through the countryside on your bike, and forget about the forum. You got some reassurance and in order to establish that at the cellular level I recommend a dose of fun, and an intervention of leaving the forum for a time. Reading all the misery here can blunt the edge of recovery. Basso
Krackersones
Well-known member
Great news, Simon! Thanks for the detailed report and for asking such specific questions. Krackersones
FantasticFurball
Well-known member
I would recommend a sailing-boat. You cant concentrate on your it-has-to-be-slow-onset-als-condition, when the wind is blowing and the sail has to be in the right position in order not to capsize....
angusglover
Well-known member
If you are in the UK, you can sail mine. I bought it but have no idea how to sail LOL.
FantasticFurball
Well-known member
No, and Im certainly not going there by my boat. Its far too small to cross the North Sea. Im living on a small peaceful island surrounded by shallow waters. Perhaps it is all that peace that made me notice that bizar muscle-twitching...
Krackersones
Well-known member
Simon,Just wondering if your neuro offered any additional opinions on what may be causing the twitching and how often she sees patients with it.Krackersones
beensuggested
Well-known member
Simon,Excellent news!!! Knew it would be. Us docs...we can really overdo the drama - of course we have the books and the diploma to prove it) With regard to Marty (?) sounds more like a radiculopathy...which would occur along a common nerve root. this can be due to a disc or other degeneration in the spine and it willnot kill you or seriously disable you either but does deserve a good looksee by a neuro to see what hte problem is so you can get it treated and get on with it. JRO....sometimes it doesn't have to be anything major. Somtimes the best name for this condition is the name it has been given. Not everyone has to be aware of the name to make it real or to give it credibility. It was even written up my MAYO...it is in quite a few med books and journals. It is benign. I understand your need to name it, understand the cause, the ramifications and make the necessary corrections - basically you need to have it defined because that is the way your mind works. You deal with logic. I get it I am not much different that you. However, I can tell you I see a whole lot of weird things daily in practice that are just transient and odd and the patient will be fine. More people can live with ...nothing to worry about here. Imagine my surpise as I was kvetching to my mom this weekend about my thumb and index fingers, my shakiness and tremory feelings and she showed me her hands and they were the same. Imangine my surprise even more when my 13 year old daughter told me she has the same darn thing AND sometimes her fingers twitch!!! Do I find anything abnormal in them? Trust me I have checked them both out thoroughly...yes there is increased stress, my mom has horrible cervical and lumbar spinal arthritis and there is something to be said about benign movement disorders. Tremors, twitching and the like are grouped under this. Yes they can be annoying as all get out but hte sumn total of the issues have more to do with annoyance and some increased instability as you get really old. No high heels when I am 80. Of course that is currently a non-issue for my daughter as she is 14 and a serious tom-boy Mom stopped wearing high heels about 5 years ago. But hey I have some seriousy longevity at least. She has had some of those symptoms since she was in her 40s as well.So what have we gotten from this discussion? Simon is well, a little anxious and has some issues to work on there. He shall relax and enjoy life and accept that this will be a companion for him but he shall not die nor be disabled, He shall likely have some flares of this condition and his anxiety. The anxiety flare shall be far more interuptive to his life than the BFS flare. Small boats should not cross the North Sea. Living on a calm and tranquil island does not cause BFS however it can make it more noticeable No one has all the answers. Sometimes if you continue to look to hard for answers even if you have been given one...you will find out through tests you are unique and not as "normal" as you thought...yet it will still not shorten your life or change anything other than give you something else to think about. Doctors can be anxious too. And most of all, life is too short, it goes on with us or without us. How much better is it to be involved and engaged outside of our own little dark boxes? It is waaaaay better!Congrats Simon!!!!!Big twitchy, tremory, ratchety, rubbery Smooches,Kit
) With regard to Marty (?) sounds more like a radiculopathy...which would occur along a common nerve root. this can be due to a disc or other degeneration in the spine and it willnot kill you or seriously disable you either but does deserve a good looksee by a neuro to see what hte problem is so you can get it treated and get on with it. JRO....sometimes it doesn't have to be anything major. Somtimes the best name for this condition is the name it has been given. Not everyone has to be aware of the name to make it real or to give it credibility. It was even written up my MAYO...it is in quite a few med books and journals. It is benign. I understand your need to name it, understand the cause, the ramifications and make the necessary corrections - basically you need to have it defined because that is the way your mind works. You deal with logic. I get it I am not much different that you. However, I can tell you I see a whole lot of weird things daily in practice that are just transient and odd and the patient will be fine. More people can live with ...nothing to worry about here. Imagine my surpise as I was kvetching to my mom this weekend about my thumb and index fingers, my shakiness and tremory feelings and she showed me her hands and they were the same. Imangine my surprise even more when my 13 year old daughter told me she has the same darn thing AND sometimes her fingers twitch!!! Do I find anything abnormal in them? Trust me I have checked them both out thoroughly...yes there is increased stress, my mom has horrible cervical and lumbar spinal arthritis and there is something to be said about benign movement disorders. Tremors, twitching and the like are grouped under this. Yes they can be annoying as all get out but hte sumn total of the issues have more to do with annoyance and some increased instability as you get really old. No high heels when I am 80. Of course that is currently a non-issue for my daughter as she is 14 and a serious tom-boy Mom stopped wearing high heels about 5 years ago. But hey I have some seriousy longevity at least. She has had some of those symptoms since she was in her 40s as well.So what have we gotten from this discussion? Simon is well, a little anxious and has some issues to work on there. He shall relax and enjoy life and accept that this will be a companion for him but he shall not die nor be disabled, He shall likely have some flares of this condition and his anxiety. The anxiety flare shall be far more interuptive to his life than the BFS flare. Small boats should not cross the North Sea. Living on a calm and tranquil island does not cause BFS however it can make it more noticeable No one has all the answers. Sometimes if you continue to look to hard for answers even if you have been given one...you will find out through tests you are unique and not as "normal" as you thought...yet it will still not shorten your life or change anything other than give you something else to think about. Doctors can be anxious too. And most of all, life is too short, it goes on with us or without us. How much better is it to be involved and engaged outside of our own little dark boxes? It is waaaaay better!Congrats Simon!!!!!Big twitchy, tremory, ratchety, rubbery Smooches,Kit