Recent Diagnosis of BFS

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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Recent Diagnosis of BFS

Postby Rodman on January 20th, 2004, 1:35 pm

Hi everyone. My story is somewhat similar to alot of the things I have read here. Before I continue let me say that it has been very helpful to find this site.
I am not sure where to begin. I think I have always been a bit of a hypochondriac. Always high strung and aware of everything going on in my body from as long as I can remember.
I will be 48 this April. Back a number of years ago (16) I had a sinus infection and experienced some dizziness and vertigo. I became confinced I had MS. I had meny tests and Blood work and went to the Cleveland clinic, Had an MRI. You know what I am going to say next right??? ALL NORMAL. I drew the line at having a spinal tap. I agreed with the Dr. to take a wait and see attitude. While I still experiened some high anxiety from time to time because of wierd numbness, tingling sensations, and Oh yea twitching. I was able to do everything I wanted to do. I was very physical. Exercising alot. Lost weight, raised two sons to the ages of 16 and 15 now.
Now lets go back to about September 2003. Right after having some dental work, ( a week later) I noticed a small spot on my tongue was numb. Everything had been fine after the dental work , but I still thought this could have been from some nerve being aggravated or something. Two months later and a visit to the family dr. I was in full blown anxiety over this. All the old fears of MS back in force. Little did I know that I would come to gladly accept that as a diagnosies.
Looking back on it now, I had some cramping of muscles in my forearms when I would go to scratch my back or stretch. Sometimes it felt like my toes wanted to cramp. I also had some wierd twitching occasionally,, Lip, Fingers, toes, etc. But that was very infrequent. And never styayed long.
I also took note that along with this numb tongue, about a month or so after that symptom that I had more cramping and muscle soreness in my forearms and legs. Esp the calves. But hamstrings also. So being the tech savy guy I am( hypochondriac ) and wanting all the info available, I got on the internet and you guessed it, found out I had ALS.
That's where my sense of humor ends. I have been fighting to stay afloat mentally ever sense. At times a very rough struggle. I decided to see a neurologist. The exam was normal, of course,,, The MRI (brain) Normal of course. He did some tests attaching electrodes and shocking me.( was this an EMG? or EV? I have heard there is a diff ) These must have been normal also. About a week ago he said he belives I have BFS. I thought he was making something up( Like the Dr. in Joe vs the Volcano, For you Hypo's if you haven't seen it you should. ) That's how I found you good folks,,, after another Internet scavenger hunt.
I am still not convinced that I don't hve ALS. my right forearm keeps cramping and makes my right hand feel strange like I can't grasp things properly. Or that it's very weak. My leg muscle hurt and cramp even though I am not doing any exercise.
I have since decided to see a Psychiatrist. After trying a number of different antianxiety / anti depressant combos. ( nOne of which I could tolerate. ( They all made me very nervous and the seemed to make the twitching worse. ) I am now on Gabitril for 3 days and seem to be tolerating it ok. Take an occasional Xanax also.
None of this has been easy for my wife to tolerate and I know I am distracted as a Husband, Father and at work. I have felat at times that I am really going to pieces. I do have percieved weekness and even feel that my breathing is strange at times. While I know these could all be symptoms of the anxiety,, because of the muscle stuff and the twitching it's hard to let go of the ALS and Oh yea,,,,The thing that started this whole rollercoaster ride,, My tongue is still a little strange. P.S. I also for years now have had this thing when I am going to sleep. Right as I am falling to sleep, my whole body jerks. I saw something in one of your articles that called it a myclonic jerk. What is that and how, if at all does it relate to any of this other mentally crippling stuff.


Well just a little bit of stress sensed here huh? Any help or feedback is appreciated.
Thanks for listening
I have got to get back to work.
Take care all.
It's not whether you get knocked down,
It's whether you get back up. V.Lombardi
Rodman
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Postby garym on January 20th, 2004, 4:46 pm

Rodman,

Your story sounds familiar. If you searched archives, there are a ton of people that have your story. The first thing you have to do is get your anxiety under control. If you have seen a neuro., and had a good exam, you're only torturing yourself about ALS. I know how hard it is to believe the drs. when you are panicked. I was there, and still am from time to time.

I think I'm the designated "antibiotic-link" member on the site these days, so I have to ask if you took cipro, levaquin, or any other antibiotic after your dental procedure? There are a class of antibiotics called flouroquinolones that have been linked to symptoms like you describe. Let me know if you have, and I will send you a link to another site that may help. For now, you've come to the right place. My best advice would be to stay away from the ALS sites, they only cause misery!, and get plenty of sleep.

Good Luck,
Gary
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Postby jcavan4125 on January 20th, 2004, 5:08 pm

Hi,
Garym is right, you have to trust your doctors; otherwise why bother going to them. You are having the same doubts and anxieties that all of us had when we first developed symptoms. This is understandable and normal when faced with the possibility of having a life threatening disease. You have to think for a moment though; neurologists are in the business of diagnosing neurologic diseases. They diagnose neurologic problems far more often than telling someone they don't have a neurologic problem. They don't do that lightly! They would have to be very secure in their evaluation before they would go out on a limb and tell you that what you have is benign. I know it easy to say and hard to do, but try to relax! Good Luck and welcome to the Board!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby SusanSid on January 21st, 2004, 2:19 am

Hello Rodman,

Reading your post made me think of the times I've experienced extreme anxiety over BFS, and I hate to admit, other phantom diseases that never came about.
These are my recommendations, as almost all of us have felt at some point what you are feeling.
1. Don't surf the web at all looking up for a diagnosis. Go to this website only, and that's IT! Especially no boards with any neuro anything... it will make you feel worse.

2. Believe that you have BFS, as it certainly sounds like you do, and I think I have had every symptom you mentioned at some point. Think over and over that it is benign, it will not kill you!

3. Your anxiety is your worse enemy. I always remind myself that FEAR is False Evidence Appearing Real. Get ahold of the anxiety, and it sounds like you are. There are great books out there too. Once the anxiety is better, you can cope with a lot more and see things much differently. Anxiety causes the scariest symptoms.

We all really do care and many have been where you are at right now. Keep up the good work and I promise it will get better.

Sue :wink:
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Thanks

Postby Rodman on January 22nd, 2004, 1:12 pm

It was very nice of you all to be so reassuring. I appreciate it greatly. I have made some commitments to myself for right now. I am going to try and stay on the medicine. I am going to exercise as often as possible and try and make time my friend. This thing really threw me into a tailspin. It is amazing how something can change your whole life so quickly and what appears to be so needlessly.
Thanks again .

P.S. I wasn't sure how to reply. How can I reply to each individual? Is that what the Quote Button is for?
It's not whether you get knocked down,
It's whether you get back up. V.Lombardi
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Postby uber on January 22nd, 2004, 1:21 pm

Hi Rodman, we have a very similar story to tell, I have also sat sometimes on a night and it feels like a small spot on my tongue is numb, then when I wake up the next day its back to normal. Also the nocturnal myoclonus started too, and If you read I think a lot of people who started twitching also experienced these myoclonic jerks.

I think its very very safe to say you dont have ALS, however like you im still a little unsure i might have MS, despite the fact I have had a clear MRI. Right now im just accepting the fact It could be BFS, cause to be quite honest I got bored of worrying about it all the time.
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Reply

Postby Rodman on January 22nd, 2004, 10:48 pm

uber wrote:Hi Rodman, we have a very similar story to tell, I have also sat sometimes on a night and it feels like a small spot on my tongue is numb, then when I wake up the next day its back to normal. Also the nocturnal myoclonus started too, and If you read I think a lot of people who started twitching also experienced these myoclonic jerks.

I think its very very safe to say you dont have ALS, however like you im still a little unsure i might have MS, despite the fact I have had a clear MRI. Right now im just accepting the fact It could be BFS, cause to be quite honest I got bored of worrying about it all the time.


Hey Uber
Thanks for taking the time to read and comment on my topic. I thought I might have MS for a very long time. I have read that there are types of benign MS that the symptoms stay the same. never get any worse or better. Not documented in the medical literature, but I believe it is there. At any rate MS would be a much better fate than ALS.
I like most was /am in a bad state of mind when I found this site. it has been most helpful to my mental wellbeing. Not sure what the myclonic jerk stuff is related to. I am feeling much better at the moment. Hope you are doing well. If I can help in any way please let me know.
It's not whether you get knocked down,
It's whether you get back up. V.Lombardi
Rodman
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Reply

Postby Rodman on January 22nd, 2004, 10:53 pm

garym wrote:Rodman,

Your story sounds familiar. If you searched archives, there are a ton of people that have your story. The first thing you have to do is get your anxiety under control. If you have seen a neuro., and had a good exam, you're only torturing yourself about ALS. I know how hard it is to believe the drs. when you are panicked. I was there, and still am from time to time.

I think I'm the designated "antibiotic-link" member on the site these days, so I have to ask if you took cipro, levaquin, or any other antibiotic after your dental procedure? There are a class of antibiotics called flouroquinolones that have been linked to symptoms like you describe. Let me know if you have, and I will send you a link to another site that may help. For now, you've come to the right place. My best advice would be to stay away from the ALS sites, they only cause misery!, and get plenty of sleep.

Good Luck,
Gary


Thanks Gary
No antibiotic here, Also no cold / flu in recent history. I talked to my dentist today and he did say that the new anesthetic he was using when he did my work caused a number of lingering numbness problems, so many that he quit using it. Wouldn't that be a hoot if rhis whole thing got started by getting my tooth fixed!
Take care gary.
It's not whether you get knocked down,
It's whether you get back up. V.Lombardi
Rodman
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Location: United States

Anxiety

Postby Rodman on January 22nd, 2004, 10:58 pm

SusanSid wrote:Hello Rodman,

Reading your post made me think of the times I've experienced extreme anxiety over BFS, and I hate to admit, other phantom diseases that never came about.
These are my recommendations, as almost all of us have felt at some point what you are feeling.
1. Don't surf the web at all looking up for a diagnosis. Go to this website only, and that's IT! Especially no boards with any neuro anything... it will make you feel worse.

2. Believe that you have BFS, as it certainly sounds like you do, and I think I have had every symptom you mentioned at some point. Think over and over that it is benign, it will not kill you!

3. Your anxiety is your worse enemy. I always remind myself that FEAR is False Evidence Appearing Real. Get ahold of the anxiety, and it sounds like you are. There are great books out there too. Once the anxiety is better, you can cope with a lot more and see things much differently. Anxiety causes the scariest symptoms.

We all really do care and many have been where you are at right now. Keep up the good work and I promise it will get better.

Sue :wink:


Hey Sue
Yea I have become convinced of the power of anxiety. isn't it a shame we can't seem to harness the positive power of the mind as easily as the fear can consume us.

I still don't think I'm posting right , but I have gotten no feedback on how to post an answer to each person who responds to a post. Other tan using this quote button.
It's not whether you get knocked down,
It's whether you get back up. V.Lombardi
Rodman
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Joined: January 18th, 2004, 10:54 pm
Location: United States

Thanks

Postby Rodman on January 22nd, 2004, 11:02 pm

jcavan4125 wrote:Hi,
Garym is right, you have to trust your doctors; otherwise why bother going to them. You are having the same doubts and anxieties that all of us had when we first developed symptoms. This is understandable and normal when faced with the possibility of having a life threatening disease. You have to think for a moment though; neurologists are in the business of diagnosing neurologic diseases. They diagnose neurologic problems far more often than telling someone they don't have a neurologic problem. They don't do that lightly! They would have to be very secure in their evaluation before they would go out on a limb and tell you that what you have is benign. I know it easy to say and hard to do, but try to relax! Good Luck and welcome to the Board!


Thanks for the welcome and the advice. I will not take it lightly. Am I posting correctly? I have been using the Quote button.
It's not whether you get knocked down,
It's whether you get back up. V.Lombardi
Rodman
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Joined: January 18th, 2004, 10:54 pm
Location: United States

Thanks

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