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AboutBFS.com • View topic - Please Help! So afraid.

Please Help! So afraid.

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

Moderators: JohnV, Arron, garym

Please Help! So afraid.

Postby sososcared on December 8th, 2008, 11:37 am

I am a 30 year old male

For about three week now I have had all over body fasciculations. They are very random and only occur at rest. They do not wake me at night and are less frequent throughout the day time and seem worse when i feel worried / stressed.. I went to my GP regarding this problem. he examined me by testing my strength in all my limbs / grip etc and reflex tests. He said I am very strong and show no signs of weakness but my knee jerk reflex was slightly "brisk" although it was symetrical so he wasnt worried (BUT I AM!!!). He also did a "babinski" test which was normal. He explained to me that as I show no signs of weakness or atrophy, he suggests that I have BFS. He said he would be more worried if i had weakness of some sort which I dont.

The day after I saw my GP, I started to feel pain in my right arm, like a cramping, dull achy pain. Now i am a BIG worrier. I suffer from anxiety and I have in the past, brought alot of feeling / pains / discomfort on myself which I have also thought were going to kill me and as a result, have had many tests including a recent MRI which was normal. (although this doesnt help me as I know ALS does not show on MRI). As I have done it in the past, I am aware that I MAY be feeling pain in my arm as a result of worrying and concentrating on it but I can not make myself twitch all over, constantly, can I? It worries me that this time, the pain is real. IT FEELS REAL but im also fully aware that I have a strong mind that can and has bought feelings on myself before.

Before all this, I have been going through months where I would feel very tired / drained for no real reason. This was put down to stress / anxiety by my doctor but it worries me that this too could have been early signs of ALS.

I called my doctor who gave me the number of the neurologist. I saw him last Thursday and he basically dont the same neuro tests. He said my reflexes are "very slightly brisk" but said he considers this completely normal and puts it down to me being so worried and all the adrenaline constantly pumping round my body. After the examination, he also told me I DONT HAVE ALS. He told me he has seen around 40,000 patients in his career and I simply do not have ALS symptoms. He was a very professional, obviously very experienced neurologist. He told me he would do an EMG to rule out anything else, not ALS as he said "you havent got that". Now this made me feel a bit better but it worries me that he still wants to do an EMG?

Now I am very guilty of the whole googling symptoms thing and we all know what disease comes up when u do that!!! I have been told by my GP and Neuro to stop doing this as it will only make symptoms worse but I find it so hard not to look.

I am PETRIFIED. I am a grown man and find myself crying with fear alot. Please try and give me some answers.
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Re: Please Help! So afraid.

Postby basso on December 8th, 2008, 12:00 pm

Holy shyt, you sound like everyone else here! :wink:

Tons of people have had so-called "brisk reflexes" and they don't mean anything. Read posts by ginlyn who had very brisk reflexes; and who is just fine. There is no "normal," just parameters that medical professionals use to help establish corroborating evidence. That means, brisk reflexes is only significant if there is "real" weakness.

Pains come and go with bfs, and even without it. I had sore knuckles for one year, seemingly for no reason. One day I woke up and the pain was gone, just like that.

We've all been where you are; it sucks. However, you have nothing to worried about, nothing at all. I have read your post hundreds of times, just by other people. They are healthy and you are too. :D

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Re: Please Help! So afraid.

Postby MPLS1969 on December 8th, 2008, 12:36 pm

Dude,

Ur fine. or, let me try that again. You dont have ALS. You have BFS. So in relative terms, you are fine. BFS can suck, but your symptoms sound quite a bit like mine. I was fine (mentally/anxiety wise) for 9 months after my first round of tests in March and April. I then seemed to get a tad more weakness/fatigue/cramping in my right arm. So I started to freak again. I finally went back to my neuro and he said I was normal. We then did another EMG on saturday just to put my mind at ease. I was normal...again.

Anyway. I empathize. Twitching sux. Anxiety sux. Crampy feeling sux. The randomness of BFS sux.

Read the Mayo study on BFS on the front page, or search it in the posts....read it and notice that not one person progressed to ALS.

Many (most?) of us on here struggle with the mental side of this stupid disorder. Fear is so lame. It can take you over if you let it. Then the catch-22 of twitching >fear > focusing on twitching > anxiety >no sleep > googling ALS > twitching > fear...etc.

One suggestion. Google is for news and interesting facts, but NOT for medical crap. It is too easy to start with twitching and end up in a horrible ALS site in like 2 clicks. STAY AWAY.

Gl
Scott
8/07 BFS started in right forearm, spread to body within month
10/7 Weakness/Fatigue/Cramp in right forearm
3/8 Cleared by Mayo Clinic
4/8 Cleared by Mpls Neuro-Clean EMG MRI Blood
12/8 2nd Clean EMG after more arm fatigue
Still twitching, focal fatigue
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Re: Please Help! So afraid.

Postby ImOK on December 8th, 2008, 1:03 pm

What answers? I don't get what the questions are unless you mean to ask:
Should I listen to my neurologist, a paid specialist who has seen 100's of cases of devastating neurological diseases or unknown people on an online forum? Your neuro.
Should I be worried about the EMG my neuro ordered? You should ask your neuro why he ordered it - most do to rule out problems, the same way you look at your gauges when your car acts funny. It doesn't feel good so maybe it is in line to worry a little about that.
What can I do about the twitching and soreness? If it hurts, treat it as you would any other muscle problem, if it doesn't try to chalk it up to another weirdo thing (like we all have). Everybody you see every day most likely has some kind of weird physical thing from they can't eat certain foods to the way they walk. People here have twitches, spasms, and strange nerve sensations from a hyper PNS.
How can I stop from worrying about this? There are programs for people to get a hold of their anxiety and deal with their worry - some people here have this problem and if you search the forum you can get some suggestions. Lots of therapies, yoga, relaxations techniques, exercise programs, etc., etc., have been found to be useful.

You do sound like so many people here so now you know at least that you have lots of company. As others have pointed out - they have bfs/bcfs/pnhe just like you and after years are still OK. If your GP hasn't done basic blood chemistry then now may be a good time to do this just to rule out deficiencies; other than that your docs are doing the right thing by checking you out thoroughly. Your job is to work with them rather against them, use them as your resource, ask them questions to help calm your fears. Come here to complain, look for help dealing with symptoms, and for info from the posted papers like the rest of us.
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Re: Please Help! So afraid.

Postby TattooedMommy on December 8th, 2008, 1:08 pm

Get ahold of your anxiety and welcome to the BFS club- do the EMG if you like it wasnt to bad- a few needles here and there and the ncv with a electrical shocks just to be told "YOU DONT HAVE ALS" which you have already been told. I went the SAME EXACT ROUTE YOU DID. Saw the neuro- settled for the WORD I didnt have ALS then went right back for EMG and was told again "Hey you big dummy you dont have ALS" , Get control of your underlying cause- Anxiety- The rest is just bfs and its stupid but it won't kill you-

Twitching 12 months now this go around-

DeeDee :wink:
(P.S. Mine are like yours they go around and they rotate and constant change spots, no hot spots)
"I've been spending way too long checking my tongue in the mirror
And bending over backwards just to try to see it clearer
But my breath fogged up the glass
And so I drew a new face and laughed".
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Re: Please Help! So afraid.

Postby Tom A on December 8th, 2008, 3:24 pm

If you read your own post you will find your answers to any ALS fears, also it is good to mention what your Neuro said about the EMG, they are not just for ALS.

The twitching and dull achey pain in the arm is conistent with my symptoms, I think the main thing that points to BFS is that nothing else is found to cause your symptoms. BFS is more of a diagnosis of exclusion, when nothing else is found to be wrong, but we know there is something wrong with our bodies, with twitcing, aches and pains, tremors, etc, we call it BFS. A large part of the medical community does not even acknowledge BFS, but the one thing I know, there is something wrong with muscles in my body, and I call it BFS. Sounds like you have it as well.
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Re: Please Help! So afraid.

Postby sososcared on December 9th, 2008, 7:14 am

WEIRD!!!

Ok guys, arm pain got alot less but now have a similar leg / foot pain. ???
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Re: Please Help! So afraid.

Postby basso on December 9th, 2008, 8:22 am

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Re: Please Help! So afraid.

Postby sososcared on December 9th, 2008, 8:52 am

Ok, I know i am paranoid, but how do you all know I am ok? How do you know that this isnt early ALS? I have read loads of ALS stories where symptoms started like mine and it scares the living **** outta me! Im so so frightened. Feel like a wreck, I cant concentrate at work, im moody all the time and my poor loving wife suffers coz im just not myself and havent been for so so long. I feel so bad.
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Re: Please Help! So afraid.

Postby ImOK on December 9th, 2008, 10:33 am

Ummmm.... because you went to a neurologist who is trained to Dx neurological disorders and he said so? ....because if a trained neuro can't spot the major disorders then he must be totally incompetent......Wait! unless, he's one of those docs who got his diploma via the internet or purchased it from a foreign country :o ....'cause your symptoms sound like every other person' here and we are not THAT neurologically disordered.....chime in here folks I'm sure there are lots more......we should have a contest for creative answers :wink:
hey you seem rather creative, if you look hard enough you can find, in yourself, symptoms for most major medical issues. :shock: Tell your wife you are experiencing early male menopause and focus on her for a while - she'll no longer suffer and you'll feel better too. :mrgreen:
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Re: Please Help! So afraid.

Postby sososcared on December 9th, 2008, 11:12 am

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Re: Please Help! So afraid.

Postby ImOK on December 9th, 2008, 12:10 pm

And you believe those stories on the net? I don't believe half of what I hear in person so I can't relate to that very well. There are stories on the net of abductions and miraculous cures, herbal face lifts and meteorites that can alter your electron fields. There are things people will say on the internet that they wouldn't utter face to face - it is a masquerade of sorts for many, full of drama and attention getting ploys. You see a little of it here also.

There was a time when I worked with handicapped people of all sorts, and let me say that, my first hand experience with ALS sufferers was nothing compared to a neurologist's who sees many clinically every year. However what I saw is that it's a progressive disease - once it starts it doesn't go back - there is no healing and people with it don't usually even notice and feel twitches. These were real people - I knew little of their suffering at the time but what they relayed was a lack of feeling & function that didn't come back or vary. Very unlike bfs or the symptoms you've described.

However, I know that nothing I or anybody can say will allay your fears if you have already accepted your imminent demise. This is something I've learned here - most people have to work through this themselves - maybe with a little help from the forum, but mostly it is the individual who has to accept that they are going to be OK.
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Re: Please Help! So afraid.

Postby sososcared on December 9th, 2008, 12:42 pm

You are all very kind and reassuring but I guess its just my nature to doubt until I have proof. I have started to feel like I am weaker every day in my arm, i have started to feel like I have atrophy in my arm and my leg coz im constantly checking. I probably havent either of these but I always doubt. I always have images of myself dying, of my funeral because I always think I have the worst possible disease from the symptoms I have. If i get a clear EMG on Thursday, I guess I will feel ALOT better. If its abnormal, I will be a WRECK!!! The waiting is impossible. Its like a roller coaster and I dont wanna be on it!!
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Re: Please Help! So afraid.

Postby basso on December 9th, 2008, 1:51 pm

The stories you are reading about people with clean emgs going on to develop als are bullshyt...but you already know that. :evil: Stop posting misinformation. We've heard it all, especially those of us who have been around here for awhile.

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Re: Please Help! So afraid.

Postby lolalemm on December 9th, 2008, 4:13 pm

Hi there. I am a 25 year old female with the same type of symptoms as you. They have been persistent since early July, right before my mom's best friend died of ALS. I want you to know that I feel EXACTLY the same as you. I continually doubt everyone who tried to reassure me that I don't have ALS. It's like in the back of my mind I'm always asking "but what if they're wrong". I haven't actually gone to the neurologist but my doctor has assured me more than once that I don't have ALS. She told me I could visit the neuro just to have peace of mind but honestly I'm too scared to even go. Its like sometimes I'm okay, but other times I'm completely obsessed! I am taking lexapro for anxiety and OCD. the doctor says these two ailments are causing my twitching. I just know that it all came out of the blue, and I have been freaked out about it since the first twitch. I am just afraid of dying and losing my life to such a horrible thing. I am also a very anxious person and I have been somewhat freaked out about diseases in my life before. I know this all sucks, but it's really nice to finally find some people that sound like they may have the same thing as me. I think I'll talk to my doc about it in a few weeks at my next visit....
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Re: Please Help! So afraid.

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