Navigating BFS Diagnosis Journey

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NinaClafinfot

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Hello. I am pretty new to this site and discovered it when googling about BFS. I was given the diagnosis about a year ago. At first I went to the doctor because of internal trembling which I was told was probably just nerves and caffeine and over exercise. Shortly after that I started twitching everywhere and of course this freaked me out so I went back to the doctor and that was when I was given the BFS Diagnosis. Like most people on here I was so terrified that I had ALS or MS and for a few months was obsessed with searching the internet to try to diagnose myself. I was convinced it was not BFS. After a few months and a return visit to the dr. they did a nerve test on my right hand which turned out normal. I had so much anxiety that what I had was MS that my dr. ordered an MRI to check for MS and the MRI came back normal as well. For the past 6 months or so I have tried to put it to rest that it's anything other than BFS. I go a few weeks where I dont worry so much but I still at times get very anxious and still have weird feelings all over my body. I know I have a lot of anxiety and can't at times get my anxiety under control. This leads me to my question. Yesterday I noticed a visible shaking of my left hand when it was in a resting position. The tremor/shaking lasted for about 5 seconds or so then stopped. This has scared me more than any of the other weird sensations/symptoms I have had and led me to google hand tremor which leads to Parkinsons. So now that is my new fear and I can't get it out of my head. I feel like I am going MAD! Have any or you other BFS sufferes had a reting hand tremor? I feel like this is starting all over again but I feel like this time I am pretty sure this is Parkinsons. I was able to get into see my neurologist today and she said she was not worried about it and that at my age of 34 it was unlikely to be Parkinsons especially since I did not have any of the other symptoms. But I fear this could be the beginning. I for some reason can't shake it that this is Parkinsons. If anyone else has any thoughts or has had this happen please let me know.Thanks,Monica
 
Hi.I have shaky hands at rest sometimes (or at least the feeling of it), shaky arms when at table or at the computer and also some kind of hand and head tremor when falling asleep and, especially, when waking up. The feeling of constant shaking or tremor all over (but especially on limbs) is there during sme periods (which I think are not related with anxiety). But then, after some days of worry (and fear!) it goes back and I feel quite normal, with just my friends (the twitches) here and there, a few times a day. The tremor can be scary, I know. I learned to live with the night tremors, but I'm not totally convinced that it's not some kind of epilepsy. Anyway, there are lots of other pople here with similar symptoms, all related to BFS (whatever this is).In your case, I don't think it's Parkinson's, for two reasons: first, you are too young for that and, second, a neurologist saw you and told it to you. You probably would have other symptoms (that's like with ALS, we tend to concentrate on twitches but these aren't the main symptoms of it: the real symptoms are clearly noticeable and you don't feel like having it - you have it and you have any doubt).So, try to be cool, thinking about two things:- You really are going to die one day, so don't waste your precious time focusing on death: you will have all eternity for that; focus on life.- To a certain extent, it's normal (and healthy) to be scared; but if you had something really bad, you would know it and be much more bored by other symptoms and concerns than by tiny tremors and twitches.I hope it helpsCarlos
 
From what little I know of Parkinson's, it seems that it's pretty easy for a trained neurologist to tell whether you have Parkinson's -- or even the early signs of it. Essential tremor and/or BFS, or even just a reaction to some substance or circumstance would seem to be far more likely given your other symptoms. If the tremor in your hand doesn't come back (and stay) then you can be pretty certain that it's not Parkinson's.Many people who develop tremors that are a precursor to Parkinson's don't actually go on to develop the disease until decades later. Michael J. Fox is probably the most famous Parkinson's sufferer, but that doesn't mean his case is typical (in fact, I don't believe it is). So even if by some long shot you happen to be correct, you might have to wait for another 25 or 30 years before more symptoms present themselves and you are clinically diagnosed. I can't imagine that you would want be sitting on pins and needles for that length of time just waiting for the worst to happen!I know this is hard (I've been through this myself) but you might want to make this promise to yourself. Tell yourself that you will put your worries aside (as much as you are able) for a period of, say, three months, and that you will deliberately ignore any ticks, twitches, tremors, and vibrations you feel -- if you find yourself noticing them, do something to distract yourself -- e,g. get up and walk around. Then, when the allotted time is up, take stock of the situation -- and try to be honest with yourself. Are your symptoms appreciably worse than they were three months ago? Even if you're not sure, then the answer is almost certainly no, but you can try again -- maybe for six months this time, and see. What I learned from my lengthy experience (and it was about two years overall) was that *time* is the best way (and probably the only way for many people) of convincing yourself that you're not about to come down with some dreaded disease. When you're in a state of heighten anxiety, it's almost impossible to know what's real and what's the product of your mind. I was convinced my throat was weakening back when I was an alsaholic, but unlike my real BFS symptoms, that one was completely the result of my anxiety. You are currently hypersensitive to anything that seems out of the ordinary, though I am willing to bet that you have been experiencing at least some of your "new" symptoms even since your BFS started a year ago -- you just weren't noticing them before.Anyway, good luck. You are not alone in your worries, and rest assured there are more people than you know that have gone through the same thing and come out the other side.Mike
 
Im 33 and I have basically the same symptoms. In fact, it is only my left hand that I notice shaking from time to time. Obviously, I get the other twitches as well, but when I'm tired or trying to hold something very still with my left hand, it does shake some. I had the same tests with the same result.I dont know what that means. Maybe we both will be fine...I also think about it, which makes me think I am causing it mentally. People seem to have tremors or they dont. You really don't hear or see tremors that come and go. The neuro told it was pychogenic..nice way of saying It's in my head.
 
I have tried some tremor (or shaking) as well. Espicially in the hands or arms from time to time, when they where held in certain positions. They usually went away after a coupple of days. I remember a finger went crazy once. Its not funny, but its a natural part of being human, I guess. Mine always stopped after a few days. They seems to be random just like BFS. I do not fear Parkinsons at all btw and neither should you.
 
Very common. Use the search function on this site and you will see. I have it too. No worries! Just get your anxiety undercontrol as that is your real disease.
 
Hi, MartinThe tremors at night stopped for a long time (several weeks or a couple of months); in the last week they came back two or three times. One night I was awake enough to tell my wife, and she could see the head tremor. I'm not freaking out so much because I talked about it to a neuro and he said it could be some kind of excerbation of the normal myoclonus that everyone has, or, in the worst case, some kind of mild epilepsy; and in any case, nothing serious.Also, the fact that it has been awhile since I began to have it and nothing special has happened (I'm not worse, I'm ok living a normal life) helps not to care about it. But it's strange, annoying and not very clear why it happens.So, you're not alone, there are other people here besides me who have it (look for LisaLM, Highpriority, Dotcom - I think - and others).It's also true that I'm taking 0,5 mg of Xanax every night, so it's maybe a good idea that of yours.Best regardsCarlos
 
I get buzzing in lots of places including hands and feet. I've gotten it in almost every place I twitch which is a lot of places. I think the buzzing is just another sensation connected with nerves firing when they shouldn't. I think this because of things my neuros have told me. I agree that time passing with not much change helps to ease your mind but it is still tough to have sensations and not fully understand them.
 

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