New to forum and very troubled

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.

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New to forum and very troubled

Postby Snert1324 on December 9th, 2004, 11:42 pm

Hi, I am a 19 year old college student. I'm happy I found this forum. So far I have no idea what's wrong with me, but I find myself crying everyday because I fear I'm going to be dead of a neurological disease in the near future.
For about 2 months now I've been experiencing frequent muscle twitches all over my body. Sometimes I get some painful cramps in as well. I also get pins and needles through my fingers, and sometimes some stiffness in my left fingers and left leg. These symptoms sound like BFS, but I have another symptom that is worrying me. At first I thought it was weakness, but I 've come to realize that it's not really as much weakness, but a strange, almost tickling feeling that I feel pretty much constantly through out my left arm and leg. Does anyone know what I mean when I say this, or has anyone experienced anything like this???
I'm so scared, I really have a good life with a lot going for me, but I do have anxiety disorder and I can't keep from feeling like I'm going to end up losing my life. I just don't know what to do anymore... :cry:
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Postby jcavan4125 on December 10th, 2004, 7:03 am

Hi,
Welcome to the board. Your symptoms sound very much like BFS. The fact that you have both motor and sensory symptoms without weakness supports that. You are the wrong age, with the wrong symptoms for it to be the "bad" disease. However, that being said, obviously no one can diagnose you over the internet. I suggest you see a physician. I would recommend either your own primary care doc if possible, or if you are away from home (you mentioned that you were in college), I would find someone besides the student health center at school. The reason I say this is that many primary care physicians (and even some neurologists) have never heard of BFS. You don't want to waste your time and money only to have someone tell you it's stress and don't worry about it. Maybe you can ask around school for recommendations of a good physician in town. Good Luck!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Snert1324 on December 10th, 2004, 8:22 am

Thanks for your reply!
I actually did you go to see my doctor, and he told me that my problems were due to stress, and since then for about a month I tried to do everything I could to be more relaxed, with no let up on the symptoms. At this point, I'm just starting to break down, I can't stay calm about it anymore.
I think I may try to see a neurologist over my winter break to try to fnd out for sure what's up, I'm pretty sure that's the only way i'll be able to lose my anxiety over this.
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Postby amy_twitch on December 10th, 2004, 11:34 am

Yes, do whatever it takes to conquer the anxiety and eliminate the 'what-ifs' surrounding your fear of a neuro condition. Trust me---almost all of us on this board have been in that stage.

Anxiety is very difficult--and even when you don't feel anxious, it can still cause many physical symptoms....almost like its all a latent reaction.

Regardless, if you do have BFS, don't expect the symptoms to go away, rather, you will have to get used to living with them for a while. Thankfully---they are benign symptoms.

I wish this was a more 'commonly known' condition--like the common cold---that would keep anyone from automatically fearing the worst when our bodies twitch. However, lots of us have learned over time, that this condition is fairly common (from our neuros)....and it simply seems that those of us who are more anxiety prone have the most difficult time believing it's truly benign. We tend to second guess our docs.

Time will help you out. Are you currently on any meds for your anxiety? If not, I'd suggest going on a short term regimen of xanax or klonopin or somthing like that. Just to help when anxiety is at it's worst.

Also, I can already tell that you're the type of person (like me) who will need reassurance and to see 'proof' that nothing serious is wrong with your neurologically. Therefore, just get all the neuro tests and get them over with. The EMG and NCV will really jump-start your mind-set into believing that the strange physical symptoms are actually benign and not worth shedding tears over.

Keep us posted on your progress....this board is a wonderful place!!

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Postby eleven on December 10th, 2004, 11:49 am

I recommend that you see a reputable neurologist, who can answer your questions and calm your fears. And the doctor who told you that it was stress gave you the typical response. Anxiety definitely makes BFS worse, however I am inclined to believe it is NOT the cause.
Also, you mentioned some other weird symptoms that are either BFS related or due to the anxiety you are experiencing over BFS.

amy_twitch is definetly right when she says that anxiety has latent symptoms. months after i had accepted my BFS and been taking lexapro, i still had residual anxiety symptoms. my neurologist explained that it takes the body/mind a long time to re-establish effective coping mechanisms after periods of intense stress. (manifestation of intense stress--crying every day).

I experienced every abnormal sensation possible during my worst anxieties over my twitches. Check out my first post on the message board about my personal experience. It should calm some worries. I have now been twitching a year.
The eagle never lost so much time as when he submitted to learn of the crow -William Blake
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Postby Stephanie on December 10th, 2004, 3:13 pm

Sensations such as the tickling (which I have often in my feet) are NOT symptoms of the bad NMD. Most people who have the bad disease who twitch (not all of these people twitch) do not feel them or even know they are twitching.
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Re: New to forum and very troubled

Postby unlucky_guy00 on December 11th, 2004, 2:29 am

Snert1324 wrote:Hi, I am a 19 year old college student. I'm happy I found this forum. So far I have no idea what's wrong with me, but I find myself crying everyday because I fear I'm going to be dead of a neurological disease in the near future.
For about 2 months now I've been experiencing frequent muscle twitches all over my body. Sometimes I get some painful cramps in as well. I also get pins and needles through my fingers, and sometimes some stiffness in my left fingers and left leg. These symptoms sound like BFS, but I have another symptom that is worrying me. At first I thought it was weakness, but I 've come to realize that it's not really as much weakness, but a strange, almost tickling feeling that I feel pretty much constantly through out my left arm and leg. Does anyone know what I mean when I say this, or has anyone experienced anything like this???
I'm so scared, I really have a good life with a lot going for me, but I do have anxiety disorder and I can't keep from feeling like I'm going to end up losing my life. I just don't know what to do anymore... :cry:


Do you know how you got it? I started twitching in college too, at around the same time that I contracted Genital Herpes. That may be your cause as well, have you been tested for herpes?
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Re: New to forum and very troubled

Postby Ish on January 6th, 2005, 6:26 pm

Snert1324 wrote:... At first I thought it was weakness, but I 've come to realize that it's not really as much weakness, but a strange, almost tickling feeling that I feel pretty much constantly through out my left arm and leg. Does anyone know what I mean when I say this, or has anyone experienced anything like this???
...


Right, exactly... a "strange almost tickling feeling", not pins and needles (though maybe that as well), almost a feeling of being weak, without actually being weak. I've had that in my left arm for months now.

[me: twitching all over 24/7 1.5 years with extreme soreness and stiffness, buzzing, pins and needles; EMG clean except for fx.
Neuro dx: BFS]
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tickling feeling

Postby eric on January 7th, 2005, 9:43 pm

i have had that tickling wierd sensation thruout my lower legs and it is upsetting, it is possible to have tick born disease and not know it so when you see your doctor you can ask, it was in the national institutes of health online description of als and they said that lyme disease can give people als like symptoms that are not related to als and are reversable, so keep that in mind.
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Postby Stephanie on January 7th, 2005, 11:09 pm

Hard to believe, but I know of 3 people actually diagnosed w/als (one was a physician friend of my dr.) that turned out to have Lyme and got better w/treatment. I do not know if twitching was an issue w/any of them. Whether it's Lyme, electrolyte imbalances or whatever, it's worth getting tested for all possibilities to get to the bottom of it and find a cure for yourself.
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