Newbie from Sydney, Seeking Support

[urgflo83]

Hi all,I'm a first time poster, 43 y.o male from Sydney Australia. I have been visiting this site for about a month now for info and support. My thanks go out to all of you regular posters who help people like me through the tough times.My story: For as long as I can remember (several years?) I had the odd localized twitch - eyeleid, little finger, bicep, etc. It would hang around a while and then move to somewhere else. About 6 months ago I noticed these twitches started to become stronger and more apparent until I developed wrist/hand pain and significant twitching/shaking in my left hand (and a little on my right as well). This intense period subsided, but the twitches (still sporadic and intermittent) continued to linger. In early December, the intense wrist/hand pain came back even stronger, and the twitches spread to all over my body (just like others here). I searched the net and found this site, and managed to keep somewhat calm over the holidays. Since early December, the twitching has remained relatively constant and occurs practically everywhere. Throughout this period, my left hand seemed to be a major focal point of the twitching. It *felt* as if the twitches were actually impacting on the feeling and strength of my left hand. I have tested my strength (lifting weights, doing pushups, etc.) and I did not notice any "clinical weakness". Visited my GP 3 times: initial dx= folic acid deficiency; next dx = anxiety; 3rd dx = "benign" symptoms, but referred to neuro "to help put my mind at ease". (The GP conducted vy basic neuro tests for reflexes, strength, etc. and pronounced everything OK) Unfortunately can't get into see the neuro for 7 weeks!!Over the past couple weeks I've noticed that using my left thumb/forefinger to do fine motor tasks (such as turning the pages of a newspaper, doing my daughter's hair in the AM) puts significant strain on my arm. After about 30 secs of holding my hand out and using my fingers, it feels as if my forearm is straining mightily to stay in place. I can feel the strain up my arm into my biceps. Sometimes my fingers start shaking if I continue. I can also see ongoing twitching in certain arm muscles whilst I keep my arm out. I can do these and other fine motor tasks (unscrewing bottles, using keys, buttoning shirts, etc) but it is causing significant and unusual straining on my thumb and forearm to do so. I also can create the strained feeling by using my thumb or forefinger to simply touch an object a certain way. Knowing that fasciculations + decreased motor skills/weakness is a hallmark of ALS, I'm sure you can understand my intense fear and anxiety at this point. Can any of you help me here? Have you had similar symptoms or sequences of events? Does anyone know if this is considered "clinical weakness"? If a muscle is dying, do the fasciculations continue at that location for a long time (mine don't - they move around)?I must say that I am spiralling into despair that I won't see my 2 little girls grow up. Any comments/advice would be so greatly appreciated.ThanksChris

 

[Gelianna]

Hey, Chris. You sound just fine to me. I'll try to go through your symptoms very thoroughly and if I miss something just ask again. I've been in your place before, so I know what you are going through. It will get better.First of all, the way your describe the onset of your symptoms would indicate that this is a benign condition. ALS moves fast, but not that fast. The fact that you twitched off and on for years likely means that you were rather in line for this disease. I was the same way. I can remember lots of bouts of twitching for the longest time before all this really hit hard.The hands are almost always a focal point for BCFS. My hands hurt, in particular my left one, and my left arm feels weak quite often. At one point, I could barely type for just a few moments before my fingers and my whole arm became so tired that I had to quit. Fortunately, this improved and now I'm typing good as ever. BCFS has all of these symptoms and many many people here have described symptoms very similar to yours. Hand and arm weakness just seem to come with the territory.If your GP could find no weakness or reflex abnormalities or atrophy, then he really is just sending you to the neuro for your peace of mind. Your neurologist will run some more blood work to rule out some autoimmune stuff, and maybe even an EMG/NCV just to prove to you that you have nothing much wrong (and to look for things like nerve entrapment that can be fixed). As difficult as it is to believe, barring some sort of nerve compression or something, all of this twitching, pain and perceived weakness is BCFS. That's practically the definition of BCFS. It's a crappy thing to have. And one of the worst things is just being able to accept the diagnosis. It's nearly impossible to believe that all this pain, weakness and twitching is benign. Just seems like a load of garbage. But it's true.I wish you could get in to see your neurologist sooner. I know that would make you feel better. In the meantime, ask as many questions as you need to.Also, do these thingson't do any internet research. There's nothing out there that will help you.Don't self-test or look for atrophy. Self-testing can actually make the pain and weakness worse.Believe your doctor. He's seen weakness, atrophy and reflex problems before. He didn't see them in you.Good luck,Paul

 

[onesMJonesy]

Hi Chris,I too am from Sydney. You sound like you have BFS. You must believe your doctors opinions about your condition being benign. Search around for a neurologist that can see you earlier. I'm only saying this so that you can have peace of mind earlier. I sort of bypassed my GP, looked in the yellow pages, rung around to get the earliest appointment I could get then went to my GP for a referral. I found I just couldn't wait. I've had twitching for 5 months now. Mine was induced by a case of severe anxiety. My mum was diagnosed with ALS last year and somehow I became just so anxious for her and developed twitching. Anyway to cut a long story short I went to see a neuro, had various tests done with a diagnosis of a benign condition. Somehow I still wasn't satisfied so I went to a second one. This fellow I see has been fantastic. I was able to get an appointment early, he recognised I had anxiety issues and treated me accordingly. Through this I've also started to see a psychiatrist and between them I've been put on Endep and a short course of valium. I now no longer need the valium because the Endep is doing its job. Anxiety has gone and the twitching has substantially reduced to the point where I hardly notice them. My point to this is that go have what ever tests you need to have and then make sure you get some form of treatment. I too have children that need me and this neuro has given me my life back. I can PM you any time if you need some further info.Be confident that your ok.CheersMaria

 

[urgflo83]

Paul/Maria, Thanks so much for taking the time to respond to my post. Your advice and words of wisdom have definitely helped me lower my anxiety levels over the last day. Maria - I'm so sorry to hear about your Mum. I didn't know much about ALS/MND before this all began, but I now understand how utterly devestating this disease is for the patients and family & friends. My heart goes out to you and your family.I did get one bit of good news today. I rang my GP and told him that I didn't think I could hang in there for another 6 weeks until I got in to see the neuro. He kindly offered to call the neuro's office directly to see if he could get me in earlier. He succeeded and I am now due to see him on the 22nd of Feb. This is a relief as I now only have to hold it all together for another 2 weeks or so.Thanks again and all the best,Chris

 

[Gelianna]

That's great news. 7 weeks is really too long to have to think about all this stuff.

 

[juliacristina]

Your twitching symptoms sound very similar to mine, but my pain is in my right ankle. I've been waiting 3 weeks for my neuro appointment - finally coming up in the next couple days.I also keep thinking that I'm experiencing weakness/fatigue in various parts of my body but it moves around so much that I'm pretty close to the conclusion that it's perceived, not actual.The funny thing is, when I read your description of everything I was thinking the whole time, "Based on what he's saying, he definitely does not have anything serious." However, when I evaluate myself with similar things it's hard to gain that perspective. Keep that in mind - it's hard to think rationally when your emotions are caught up.I have a little boy, a little girl and another one on the way. That's all I think about too when I've thought I might be sick. Those thoughts don't help out with managing anxiety.I just finished reading an old book by Dale Carnegie called "How to Stop Worrying and Start Living". I highly recommend it and I know that others on the board do too.