Life On Hold, Please Help

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Life On Hold, Please Help

Postby windquick on September 6th, 2002, 2:41 pm

Hello,

This is my first post, and I am sorry but it is going to be quite a long one. I have been lurking here for a while - I am so glad to have found this board and I hope you will be able to help me. I am writing because my fiance has what could be BFS, although he can't actually get a diagnosis as such because we are in the UK where it isn't really recognised as a condition.

He is terrified, and too afraid to go on this board because even reading about Motor Neurone Disease/ALS sends him into a panic. He has seen a top neurologist 4 times who has given him 3 separate EMG tests, including one of the tongue which were all negative. His blood tests were fine and so were his strength/reflex tests too. Basically the neuro can't find anything wrong with him and said that sometimes fasciculations are present 'without meaning anything' and he thought this could be the case with my fiance. He prescribed Tegretol and Baclofen for the twitches which help a little but not much.

Unfortunately, this sounded more like speculation than a diagnosis and so my fiance's life is still absolutely blighted. He is 31 years old and he doesn't leave the house except for doctor's visits because he is so fatigued (he struggles to climb two flights of stairs) and depressed, waiting for such a time as the doctors can finally diagnose him with something (in his mind, with MND). He feels like he can't get on with his life until he has a diagnosis either way and he can't get one of those so perhaps you can advise us. Our question is simple: do the following symptoms sound to you like BFS?

His twitches started six months ago after a period of anxiety and stress and quickly spread all over his body including his tongue. He has a twitch every 15 seconds or so, all the time, as well as frequent jolts. He also has deep pain in his calves, really incapacitating fatigue and during the last few weeks he has been feeling what he describes as 'heaviness and numbness' - like the precursor to 'pins and needles' - in his arm and one leg although he saw a second neuro yesterday who could find no loss of strength.

We have been through all the doctors and they just say that they can't find anything wrong with him that would explain his symptoms so he has to keep coming back for observation every few months but he is so terrified it is MND/ALS that life is very difficult for us both with no end in sight. His next neuro visit is mid November, and I am pretty sure that he will get the same result as before, no definite diagnosis, and nothing will change. Therefore, any insight or similar experiences of BFS you could share with me would be really great since I am struggling to be strong for him and don't know where to go from here. The doctors don't seem to be able to help us out of this limbo situation. Please help.

God bless and thanks for reading this,

Windquick.
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Postby Jake_the_twitch on September 6th, 2002, 6:00 pm

His story sound very similar to mine except I haven't had the pleasure of tongue twitching. It seems to me that he does have BFS and a perhaps a strong case of depression/anxiety. The fact that he feels weak to the point of being incapcitated yet the doctors don't see it ,is a key indicator that his anxiety is ruining his life. If he was weak from a Motorneuron disease the doctors would have been able to pick this up from a simple physical exam. Have any of the doctors prescribed a mild sedative to help with his anxiety? If not get him to see his GP and get one. With BFS the fear is unbelievable and time is the best source of reassurance but breaking the mind game with meds can help get him through the rough period.

Good Luck.
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Re: Life On Hold, Please Help

Postby Guest on September 6th, 2002, 6:17 pm

Yes. It does sound like BFS to me. If he has had 3 EMG's and they have been fine, then I don't see how it could be ALS. The EMG's would show something if it was motor-neuron disease. I too was scared to death and it took 5 years for me to finally get a diagnosis of BFS. I think fatigue can be part of BFS. If he's not dropping things, falling down, those types of things, then it sure doesn't sound like ALS. Something should've shown up by now if it was because it is a very fast progressing disease. I'm sure you know that the life expectancy with ALS is 2-5 years so in 6 months time, he would be getting a lot worse. I have been browsing this forum for a while now and it has been a godsend. Get him to read some of the posts and he will feel much better. There are people out there with the same symptoms as him. I guarantee it will help, not hurt. He is not alone in this twitching mess. Take care and let us know how it goes. I'm sure November will come and go and things will be just fine.


windquick wrote:Hello,

This is my first post, and I am sorry but it is going to be quite a long one. I have been lurking here for a while - I am so glad to have found this board and I hope you will be able to help me. I am writing because my fiance has what could be BFS, although he can't actually get a diagnosis as such because we are in the UK where it isn't really recognised as a condition.

He is terrified, and too afraid to go on this board because even reading about Motor Neurone Disease/ALS sends him into a panic. He has seen a top neurologist 4 times who has given him 3 separate EMG tests, including one of the tongue which were all negative. His blood tests were fine and so were his strength/reflex tests too. Basically the neuro can't find anything wrong with him and said that sometimes fasciculations are present 'without meaning anything' and he thought this could be the case with my fiance. He prescribed Tegretol and Baclofen for the twitches which help a little but not much.

Unfortunately, this sounded more like speculation than a diagnosis and so my fiance's life is still absolutely blighted. He is 31 years old and he doesn't leave the house except for doctor's visits because he is so fatigued (he struggles to climb two flights of stairs) and depressed, waiting for such a time as the doctors can finally diagnose him with something (in his mind, with MND). He feels like he can't get on with his life until he has a diagnosis either way and he can't get one of those so perhaps you can advise us. Our question is simple: do the following symptoms sound to you like BFS?

His twitches started six months ago after a period of anxiety and stress and quickly spread all over his body including his tongue. He has a twitch every 15 seconds or so, all the time, as well as frequent jolts. He also has deep pain in his calves, really incapacitating fatigue and during the last few weeks he has been feeling what he describes as 'heaviness and numbness' - like the precursor to 'pins and needles' - in his arm and one leg although he saw a second neuro yesterday who could find no loss of strength.

We have been through all the doctors and they just say that they can't find anything wrong with him that would explain his symptoms so he has to keep coming back for observation every few months but he is so terrified it is MND/ALS that life is very difficult for us both with no end in sight. His next neuro visit is mid November, and I am pretty sure that he will get the same result as before, no definite diagnosis, and nothing will change. Therefore, any insight or similar experiences of BFS you could share with me would be really great since I am struggling to be strong for him and don't know where to go from here. The doctors don't seem to be able to help us out of this limbo situation. Please help.

God bless and thanks for reading this,

Windquick.
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Postby charlene on September 6th, 2002, 7:35 pm

I'm sorry to hear about your difficulties. BFS is frighting and can cause a great deal of anxiety.The medications may be causing some of the fatigue, check with the doctor. I can relate to being so frightened that I could easily have crawled in a corner and let life pass me by. The only thing that kept me going at the time was my family. The best thing you can do for him is to be supportive and understanding. And yes...get him to read the posts, there is so much information here and answers to almost any question or concern.There is very little support for people with this condition because it is not well understood and many doctors have not even heard of BFS. Become as informed as you can about this syndrome because knowledge is power. I also get the tongue twitches, I've even had times when my ear drum twitches for days. Twitches can occur anywhere at anytime and last days in the same spot or move rapidly throughout the body. Many people have had BFS 20, 30 or more years and wasted away years of their lives worrying about tomorrow when they could have had today. Go on with your plans and dreams for a long happy life together.
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Life need not be on hold

Postby Dr. Jon on September 7th, 2002, 4:06 am

Windquick, First thank you on behalf of your fiance for helping him in the way you are! I have been in that exact same position. I developed fasiculations about a year ago and because I am a chiropractor i immediately thought "ive got ALS"! I was so convinced and horrified that i was unable to do anything without constantly thinking about how my kids were going to be without me, and how painful would my certain death be.
I had to get my wife to go on the internet also! as i was certain of what i would find. Unfortunatly she did not come across this site which would of saved literally a year of insanity. I went to doctors that told me its "just from stress" there benign dont worry so much. But i know what your fiance is going through, even though you are told they are "benign" there is no rational given as to what is causing them! It wasn't till i found this website that i was able to really learn what "benign" fasiculations are. what your fiance has is what the i and others on this site have=BFS
Tell him that with 3 negative EMG'S it is impossible to have als!
What i found im my case is that once you go through months of thinking you have als or some other deadly disease i believe that thinking changes the chemistry in your brain. This further worsens the symptoms! Of course then the doctors say it is all from stress, but what they dont get is that the only thing your stressing from is the thought that you have some deadly condition!
Because of this i personally believe that SSRI (selective serotonin reuptake inhibitors) would be of great help in his case. I know there are others on this site that may differ but i can only tell you from personal experience that for me it was the only thing that was able to allow me to get my mind off my horrible thoughts that were present 24/7! Both zoloft and effexor work well and there are about 6 others that work differently on different people. This advice comes from someone who is totally against most meds. But if your fiance is not able to get is mind off the twitches/als etc.. the vicious cycle will not be broken! These meds are not addicting, they will take a couole of weeks to work and he will get off them slowly when he feels like he no longer needs them. I have also reading books on the power of the subconsious mind to be of help too.
There are a lot of theories on what initiates bfs, virus, bacteria infections, etc but nothing foresure. only thing forsure is that it will not harm him and will most likely get much better as his mind stops thinking the worst.
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I agree

Postby RaeKwon on September 7th, 2002, 5:40 am

I agree with all the above posts. A negative EMG basically rules out ALS. Therefore, I'm not surprised he had 2 negative following EMGs. My twitching has come and gone although this time round it has hung around for a lot longer. I can now say that I'm past the ALS anxiety stage and things are looking up. Since then my twitches have taken a real dive and I barely notice them at all now. Rather than all over, I tend to get hot spots which is how this whole thing started - so, I'm hoping that it is in reverse, and it will go away as it has done twice before for me in the past.

The point I really want to get across though, is that he MUST NOT let this thing ruin a year or two of his life! (and yours!) Some of us have twitched for decades and are living otherwise healthy lives. He must make a decision that he's not going to let this ruin his life. A good start, is to start reading the posts here.

I really feel for your fiance at this point in time. But, he does NOT have ALS. Wait till Arron get his 10 cents worth in. He is the best at ramming the facts home!

God Bless and take care.
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Postby Arron on September 7th, 2002, 12:12 pm

windquick, you sound like a hell of a gal helping him like that. My own wife and family didn't want to deal with me and thought I should "just snap out of it" and you can't! Trust me on this one girl... 3 negative EMG's means not only no ALS, it also means NO NMD at all, period, end of story. The BEST thing you can do is drag him over to the computer, sit him down and make him start reading these posts by numerous people that have ALL gone throiugh the EXACT same thing. It will ease his mind for sure.

Also, keep this in mind, depression and anxiety are both SERIOUS conditions that change body chemistry, the thought process, motor skills and cordination. BOTH of these conditions can cause you to feel SEVERELY fatigued, achy, shakey, tired, no energy, lack of strength (but NOT clinical weakness that is found witn NMD's), body shakes and jolts (which are both benign), and a whole slew of other REAL symptoms. So when someone says "it's only stress" or "anxiety" or "depression", don't just blow it off, because all of these have VERY REAL symptoms and side effects. I've been there and had ALL of those side effects and then some and no one could have convinced me that this was all caused by my mind.. well, what controls your entire body and existsnce? Your brain!! When anxiety or depression takes-over, it means your brain is temporarily sick and it needs some help. Help can come in the form of good news (such as a clean ruling of no ALS, medications or just about anything that counter acts the underlying root of the cause, which in his case is raw FEAR. DO NOT be afraid of BFS and the reason your UK doctors probably haven't heard about it yet is the very same reason most US doctors haven't even heard about it yet... they just aren't educated in this particular subject is all. I have many doctor frineds that I play golf with and hang-out with that still don't know about BFS or even believe it exists, but the DO acknowledge that benign fasciculations are real and carry many other symptoms. If your guy wants to e-mail me direct, he certainly can. My e-mail address is [email protected] He will be fine. A clean EMG ALWAYS means no ALS, period. His doctor isn't stupid or uneducated, ge just doesn't know about the three letters of BFS yet. He obviously did know about some type of benign twitching, so he's on the right track anyway. Make him read all of the posts on this site and when he's done, make him go over to the Braintalk.org web site and the MedHelp.org site too. A LOT of people have BFS and Fibromyalgia (which may indeed be one on the same) and everyone is just fine and it can not and will not "turn into" anything bad either...
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Thanks!

Postby windquick on September 7th, 2002, 1:10 pm

First of all THANK YOU to you all for replying so quickly and at such length - it really made me feel better knowing that there are so many kind, friendly people willing to share their knowledge and experience. One of the worst things about this condition is that even the people you would normally trust implicitly, doctors, don't know about it - there is so much ignorance and that creates fear.

I printed out your posts and showed them to my fiance. He is also very grateful to you and it gave him much food for thought but I don't think he is ready to actually get in front of the screen yet - I wish he were but I think it will take him a long while before he is able to hope that he doesn't have a terminal illness. In the meantime I am still searching for information that could help him.

One of the problems he has (and I am about to start a new thread about this) is that he doesn't believe that anyone can feel this bad and it still be benign. If he does have BFS, then as far as I can tell, it is pretty severe. The other is that everybody, including him, agrees that he needs anti-depressants but he CAN NOT take them because some of the side effects are dangerous to him for other medical reasons. Both of us have taken them in the past (I am still taking St John's Wort) so there is no reluctance to take them, in fact he would LOVE to be able to!

Thanks again,

Windquick
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for your fiance

Postby Dr. Jon on September 8th, 2002, 3:07 am

Windquick, All i can say is that if you were to talk to my wife she would tell you that there is no way that anyone could think, that they were more certain that the doctors were wrong, and that i was sure i was going to die than me. I really do know what he is going through and i know there are others on this site that do to. I even talked about my life insurance policy's and that i should have gotten more but that "now it is too late". I would cry some nights thinking how it could be my last. While my wife like you was there for me and tried to reasure me that i was going to be fine, i was convinced otherwise. Because of that, the positive books that i read, the inspirational tapes i listened to, the subliminal messages i heard, nothing could help because my mind was literally shut down. I believe the only thing that would have helped (other than finding this web site a year ago!), would be to have talked to someone who had experienced exactly what i was going through. To know that there is a label to the condition, to know that you do not die from it. And to know that when i spoke to someone about it that they really understood what i was experiencing.(which is why to this day other than to help others here, i do not go into detail with friends about it cause there is just no possibly way that they would have any idea on how it feels to have constant unexplained twitches and they could not possibly understand the magnitude of how it had effeted my life for literally a year!
The quicker that we can pull your husband to be, out of this horible vicious cycle the better. I see that some meds may be inappropriate, and it sounds like you are familiar with st. johns wort. I am familiar with many other nutricuticals that may be of help. If i can be of any assitance and i think i can, please just email me, ill even call him if you like! Be patient with him, and he will come out of this!
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Postby Arron on September 8th, 2002, 11:29 am

I'm with Dr. Jon here too. I went through EXACTLY the same thing as him and your fiance' and many other's as well. I wish John (the owner of this site) could get the archives back-up from the old web site because there were LOTS of other people that literally planned their own deaths and were 100% convinced that they were going to die with REAL symptoms. We understand what he is going through because we have lived it and survived it and let me tell you, it is pure hell and no one around you cane see it or understand it. You mind simply shuts-down all reality and you won't listen to anyone, even the experts!

Paxil and other "SSRI's" are terrible drugs that have more people posting about their bad experiences with them than people that actually got better by taking it. There are LOTS of other meds, such as Xanax, Valium, Ativan, Klonopin, etc. that have basically NO side effects and that don't really interact with other medications or herbs.

I personally know the power of herbs and botanicals, I used to own a company that manufactured the world's most potent green tea extracts but I have to say, man made medications blow that stuff away and work MUCH better and are much more controlled. I have no idea what your fiance' has going-on with him other than what you have said in these threads (which is surely BFS) but I'd certainly dump that St. John's Wart for Ativan ANYDAY. There is no comparison between the two. That's like comparing tea made-up of Valerian root (the old botanical used to make Valium) and a 10Mg. tablet of refined Valium, or like eating Willow Tree bark when you have a headache instead of taking an aspirin (which comes from refined Willow Tree bark). There is no comparison!

Look print this out for him to read:
Dude, I and MANY other's on numerous other forums (literally thousands of us) have been through EXACTLY what you are going through. Yes, the symptoms are real and they scare the living hell out of you but for sure, you do NOT have ALS. That is 100% IMPOSSIBLE with the tests you have had done and they don't "miss" anything or lie. What you have is real, it is NOT in your head. Other people around you can not and will not understand, (except for your wonderful fiance'), so do not expect them to and do not expect any sympathy from other's that have no clue about this stuff. All you'll get is "snap out of it" and you can't... I KNOW!

Your body or brain (we don't know what causes BFS yet) is going through a change and causing very real symptoms. The depression and anxiety you have are most certainly in your head but they are CAUSED by your fears of your symptoms which no matter what you think, are BENIGN!!!

You NEED medication to help alter your thoughts or you will be stuck in this vicious downward cycle (and wasting your life) for a long time. Go talk with your doctor and get some REAL medications that you can take to help you that won't interfear with whatever else you have going-on and drop that St. John's Wart junk. That ain't gonna do it for you. You WILL be OK, trust me and other's that have walked in your shoes. The fears are horrible and it can turn a big grown man into a crying little baby that won't get out of bed or leave the house.. I KNOW!! Like Dr Jon said, if you need to call one of us, we WILL help you, OK? We know more than most doctors do on this because we have been through it and have talked with SO many more people with this stuff and have studied it WAY more than ANY doctor ever has AND we have walked in your shoes. On the old web site, there was even and MD that had BFS and he was so convinced that he was going to die with a horrible NMD or ALS that he started planning his own funeral too, as did I and many other big strong guy's. There's no shame in that. We were convinced that we had ALS and that we were going to die and wanted to make sure things were taken care of... a noble attempt at a futile game because there was NO NMD or ALS.

ALL of the info in books on ALS saying that "twitches are a precurser to ALS" are WRONG! Even a good neuro will tell you that. These are two hard, real facts; twitches without the presence of weakness is NOT ALS and a clean EMG ALWAYS = no ALS... period! Take a deep breath and understand that your doctor is right and we are right and you are not dying and you do not have ALS. If you want to call us or e-mail us PLEASE do so. We are here to help becaue we have LIVED and walked in your shoes and it is SO scary, we feel compelled to help other's going through the same thing. So DO IT and quit wasting your life on this stuff, OK buddy?
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I'm worried though...

Postby windquick on September 8th, 2002, 5:54 pm

I will print your latest posts and show them to him. Thanks, thanks, thanks.

To clear up a confusion though, I am taking St. John's Wort, not him, and it suits me fine. He can't take any anti-depressants. This has to be a drug-unassisted recovery, which probably makes things harder.

The good news is that I really believe he can recover without anti-d's , but only if he can believe that BFS can feel as bad physically as he does, and still be BFS. Therefore please, please, PLEASE read my 'How bad can BFS get?' thread in this forum and reply to it if you can. It is the single biggest obstacle to his recovery and I am really worried because nobody has replied to it yet. Does this mean that his symptoms are too severe to be BFS? I am scared that I have been telling him and telling him to be hopeful yet what if I turn out to have been giving him false hope....? Don't know what to think, don't know what to say or do for the best. Please help (again)

Windquick The Worried. :(
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I'm worried though...

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