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3 years+ and getting worse

PostPosted: June 10th, 2015, 9:20 am
by electroman
I just wanted to share my twitching story and my symptoms, specially to all those who experience muscle pain and knee problems, I am quite an experienced chap when it comes to these. And hopefully I can find someone with similar symptoms to mine and have a chat. I have been reading this site since I started to feel I was dying from a neuromuscular disease and it has help a lot. Like many of you I started with buzzing and fasciculations, the big ones you can easily see under a shirt or trousers, and the thin ones I can barely see. But today my main concern is not the twitching but the pains and muscles issues. I have been a skateboarder for years, football and tennis player also for more than 10 years, and I never ever had any muscle problem. Today I have pulled and teared muscles all the time! Specially my left knee is killing me (both the back and the front of my knee). Today I went for jogging and when I hit the 5 km mark I had to come back walking because of the pain in the back of my knee, and other two sharp pains in the tight muscles of same leg. I am 40 years old, which is not really much to be suffering from knee and muscle issues they way I´m doing. One thing I am sure, I would be able to do any kind of sport without any issue if it weren´t for this horrible disease.

Now, why I suspect I don´t have ALS?
I had one single clean emg 11 months into twitching and it was fine.
I been with this for 3 years and 2 months, and I can still walk, climb stairs and carry my kids with no bigger issues other than pains.

Why I suspect that this is not only BFS but it could also be something more sinister?
Because all these pulled muscles and tears that prevent me from running or playing any other sports are not imaginary, are real, they are not a sensation, they are real injuries and sometimes they take months on healing; and in some way this is sort of a disability, since I can not do what I used to do. I only hope that this is not a slow progressive form of MND, and with shame I have to recognize that this is everyday on the back of my head.

Since I started with this, I can not concentrate properly any more, can´t finish a book; Every book I start I drop it after a few chapters. Before I used to be and avid reader. Depression, yes, you could say so. I am a scriptwriter, I can ´t write anymore, so I guess that I should say I use to be a scriptwriter. I really admire those who can handle the anxiety and the depression and keep on with their work and have a normal life. Personally, I have become a less productive person since all this started, a worst husband and probably a worst father, but this is my main battle, to try to be positive and not be a source of dark depressive energy in front of my wife or kids, so I swallow everything and the battle happens only inside. And that´s pretty tough.

I am not taking any medicines or going to a psychiatrist or anything, and this is the hard part, since from my experience, when I tell my family or my wife about my horrible suspicions they all think I´m being paranoid, even if they see the fasciculations they can´t, or they don´t want to believe that this could be something horrible. So basically I am the only one who knows that is real and I have to fight it alone, like most of the members on this site I guess. I haven´t share my symptoms with my parents or wife for months. I just tell them I can not run because of the pain in my leg. Unfortunately I don´t have the money really to pay for any professional help, and honestly, If I did, I wouldn´t spend it.

One things that sort of reassures me, once each 2 months or so I do this strength test, where I stand in one leg (the tip toes with the knee slightly bended) and I hang in there for 2 whole minutes. That´s the only strength test I do from time to time, I started with it 2 years ago and I still can do it. So that is a good sign, I guess. I think I will wait a couple of years more to do a final self diagnosis about this, which is when I will hit the 5 year mark. Then I will either open a bottle of champagne if I am still walking and climbing stairs, or get a new emg if the situation keeps getting worst, as it has been since the start.

To sum up: 1 year was everything about twitching and buzzing, anxiety and fear, panic attacks, etc. The second year was all about isolated muscle pains and tiny muscle injuries that didn´t kept me from doing sport, but were very annoying. 3 Year, it´s all about propper muscle injuries that have kept me away from sport, and that take ages on healing.

As for today, I twitch everywhere, from arch of foots (the worst specially left one) to throat, forehead, ribs, pelvis, you name it. Buzzing, also everywhere. I really don´t think this is going to disappear from one day to the other. It has destroy my life in some way. I am not the same person as before, but I have learnt to handle better the anxiety and the fear. Handling this disease alone has been the most difficult thing I have experienced in my whole life.

If someone makes it to the end of this long post, hang in there, you are not alone, think positive, and if you have kids or a beautiful adorable wife, don´t make their life miserable with your fear and paranoia, even if it´s something nasty, be positive and try at least to look happy, even if you feel that your muscles are dying and you are having a crazy battle agains your dark side. IN any case, if you twitch everywhere and you have been twitching for months or years and you are still walking and climbing stares, 99% chances you have BFS or something else which would be not that nasty like ALS :) I have learnt, and this is the only advice I can share, that I am not the center and not the most important thing around here, the others are (wife and kids) they deserve to see the best side of me, even if I´m alone in this crazy constant battle against myself, they need me and not only me, but they need a happy positive enthusiast father, I know easier said than done :) but think positive and time will tell, being worried and depressed won´t help only make matters worse for you and those around you