My story after 6 months of twitching

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

My story after 6 months of twitching

Postby HeyHeyJJ on April 3rd, 2014, 8:49 am

This is my first post after lurking around here for close to 6 months and this is my story. I apologize for the long post but I have much to describe...

Last August I moved from the Tulsa, OK area to Houston for a job change within my company. This was a HUGE change from anything I had ever experienced in my 27 years of life and it was stressful to say the least since I grew up in the "country". I am also an avid cyclist and I went from cycling 100 miles per week during my lunch breaks with a group of colleagues at 20mph+ averages to not cycling at all because it is just not safe to do in Houston. To top it all off I have been having chronic upper respiratory infections every other month since I have been down here and this is how my BFS experience started...

Towards the end of September I found a running/hiking paved trail and I started cycling off and on again at my normal intensity since my cardio was still great but at night I started to notice a few twitches in my right calf muscle. I am no stranger to twitches since I cycle so much but they usually leave just as fast as they come so I didn't think anything of it. A few days later I went to see my GP about a severe sinus infection and he prescribed me an antibiotic and a decongestant. That Friday night I was lying in bed when both calf muscles started to violently twitch, I could visibly see and feel them. Then I made the worst mistake I could possible commit, I googled "muscle twitches" and then "fasciculuations" came up and my entire MENTAL life changed. I began to stress out so much the fasciculations immediately moved into my arms. At this point I got in my car and drove to see my parents like 7-8 hours away because I thought I was going to die. Saturday morning I went to see an urgent care physician who said that bilateral muscle twitches usually signify nerve irritation or vitamin deficiency and sent me on my way. This answer was of course not good enough...

I traveled back to Houston and scheduled an appointment with my GP and he ran blood work which was clean and referred me to a neurologist for a clinical exam. I went to see the neurologist and told him the entire story I just described to you about moving, exercising, infections... He did a full clinical exam and noted that I did have symmetric hyperreflexia in my legs that was most likely brought on by anxiety but I also have had brisk reflexes during my yearly physicals for as long as I can remember and those doctor's have attributed it to youth and exercise. He also diagnosed me with generalized anxiety disorder. He said I knew the moment I walked in the room you didn't have *** and I quote "We can go to another room and have an EMG performed that will make me a lot of money, you very uncomfortable in your current state, and your insurance company very nervous. So you don't really need one." He went on in great detail letting me know that this is most likely caused by a complete 180 in my exercise routine and possibly the combination of the medicines simulating my already irritated nerve endings since decongestants have stimulants(pseudoephedrine) in them. He said I had benign fasciculations! I decided to opt out of the EMG and get on with life which is very very hard to do with *** lingering in the back of your mind.

Around the end of November I developed sensory(tingling, numbness, electric) sensations in my arms, legs, and back...along with the continued twitching. I went back to my neuro and he ordered a brain and cervical spine MRI to make sure I didn't have MS or a mass that could be causing these symptoms, the MRI can back clean. He thinks it is most likely anxiety/stress causing the symptoms because of the *** scare, my move to Houston, and not being able to do the hobbies I enjoyed doing.

Fast forward to this very week. I have been having continued sinus infections and back pain, sensory issues, and the twitching had started again primarily in my right calf and foot. I went to my GP with concerns that maybe we should start looking at an underlying cause of the infections and back pain so he ordered a CBC and autoimmue disease panel which all came back clean and would like me to go see an ENT specialist. I also went to see my neuro for a 6 month follow-up after my initial twitching and because the twitching started back up after a long hiatus. He performed another clinical exam which was clean and thought it would be a good idea to get an EMG which he scheduled for yesterday.

So yesterday I had been freaking out about the EMG because of the possible implications of the results and it set me into a full blown anxiety attack while I was at the neuro's office. He came in to talk me down and I began to ask him several questions.
1) Me - Why did you schedule the EMG?
Dr. - I wanted to peform the EMG because I think you may have a minor muscle/nerve disease and because I am 98% sure you don't have *** and I think you are too but I wanted the test to be the last 2%.
2) Me - What do you mean by minor muscle/nerve disease?
Dr. - We don't even now what BFS, BCFS, CFS, and fibro actually are since they are not things that are going to kill you so our research money is better spent elsewhere and we lump minor muscle/nerve diseases into these syndromes.
3) Me - I know you don't believe I have *** but if I am diagnosed with a minor muscle/nerve disease would there be a possible cure?
Dr. - Most likely no and we would only be treating symptoms because it is such an unresearched area of medicine
4) Me - I decline to take the test because I have no atrophy or clinical weakness and if that test does show some signs of *** then I am a perfectly healthy young man with sensory issues and twitches that is going to be stressing out and waiting for a disease to begin that I can't do a *beep* thing about anyways and I don't want it to affect how I will continue to live my life.
Dr. - I completely agree with your decision so we will address your symptoms moving forward unless something changes.
5) Me - Can you coach me with health anxiety?
Dr. - Yes.

I hope my story will be beneficial to people out there.
Last edited by HeyHeyJJ on April 3rd, 2014, 4:24 pm, edited 3 times in total.
HeyHeyJJ
Interested
Interested
 
Posts: 11
Joined: October 21st, 2013, 5:38 pm

Re: My story after 6 months of twitching

Postby nervous nel on April 3rd, 2014, 9:58 am

Hello :) I think you fit in with everything I've read on here about bfs, I myself still go through the *** scare and this site has helped tremendously with calming me down. From what I've heard from the long term bfs sufferers on here you did the right thing deciding not to have the emg has if your clinical is good and you're strong it seems something that can cause unnecessary worry for some, your neuro sounds very competent and I'm sure he would insist if he was unsure, you sound like a typical bfs sufferer :)
nervous nel
Member
Member
 
Posts: 33
Joined: February 25th, 2014, 2:17 am

Re: My story after 6 months of twitching

Postby HeyHeyJJ on April 3rd, 2014, 10:18 am

nervous nel wrote:Hello :) I think you fit in with everything I've read on here about bfs, I myself still go through the *** scare and this site has helped tremendously with calming me down. From what I've heard from the long term bfs sufferers on here you did the right thing deciding not to have the emg has if your clinical is good and you're strong it seems something that can cause unnecessary worry for some, your neuro sounds very competent and I'm sure he would insist if he was unsure, you sound like a typical bfs sufferer :)


Thank you Nel. I have the utmost faith in my neuro's 25 years of experience, education credientials which specialize in *** and MS, but mostly in his understanding and compassion he has shown to me during a very difficult period of time.

Also, if anyone is in the Houston area and need a good neuro please PM me and I can give you his contact information.
HeyHeyJJ
Interested
Interested
 
Posts: 11
Joined: October 21st, 2013, 5:38 pm

Re: My story after 6 months of twitching

Postby nervous nel on April 4th, 2014, 10:55 am

Anytime, I'm glad you have a good neuro :)
nervous nel
Member
Member
 
Posts: 33
Joined: February 25th, 2014, 2:17 am

Re: My story after 6 months of twitching

Postby Gamindsoc1509 on April 6th, 2014, 9:35 pm

To be honest I am even surprised he said 98% sure you dont have ALS.

Or did he say he was 98% sure you have a minor nerve/muscle syndrome cause that's a big difference.

FYI I started mid September... in a similar boat. Saw a neuro at the 1.5 month mark and have not been back...
Gamindsoc1509
Senior Member
Senior Member
 
Posts: 96
Joined: December 11th, 2013, 9:10 pm

Re: My story after 6 months of twitching

Postby HeyHeyJJ on April 7th, 2014, 7:38 am

Gamindsoc1509 wrote:To be honest I am even surprised he said 98% sure you dont have ALS.

Or did he say he was 98% sure you have a minor nerve/muscle syndrome cause that's a big difference.

FYI I started mid September... in a similar boat. Saw a neuro at the 1.5 month mark and have not been back...


He said I am 98% sure you do not have ALS and I am sure you(refrerring to me) believe the same thing, but he wanted to schedule the exam to give me the 2% of assurance. He has diagnosed me with BFS in October after my clinical. He also wanted to make sure I didn't have any neuropathy since I have been complaining about tingling and numbess in my neck, back, arms, hands, legs, and feet. Which basically began about when this whole twitching fiasco started so it is probably stress and anxiety related because my neck and back muscles have been knotted and tight since the start...

The doctor also said that if I don't have any muscle weakness after 6 months of twitching then I should just stop worrying. I had another big scare yesterday when my right thumb started twitching and moving which has never happened to me before but I am also noticing buzzing in the middle of my hand and I have been waking up with numb ring and pinky fingers. I am guessing I am having some nerve issues since I work IT and I am constantly moving between two workstations and scanning 4 monitors.
HeyHeyJJ
Interested
Interested
 
Posts: 11
Joined: October 21st, 2013, 5:38 pm

Re: My story after 6 months of twitching

Postby nervous nel on April 8th, 2014, 2:38 am

Hello heyheyjj it's a common thing in bfs to have new twitching places even after a long time I've been twitching almost 4 years and still scare myself! I've had some hand twitches recently and never twitched there before, but I know hand twitching is extremely common in bfs! :)
nervous nel
Member
Member
 
Posts: 33
Joined: February 25th, 2014, 2:17 am

Re: My story after 6 months of twitching

Postby HeyHeyJJ on April 8th, 2014, 8:44 am

nervous nel wrote:Hello heyheyjj it's a common thing in bfs to have new twitching places even after a long time I've been twitching almost 4 years and still scare myself! I've had some hand twitches recently and never twitched there before, but I know hand twitching is extremely common in bfs! :)


This is just such a weird syndrome and I guess as time goes by I will get used to it more and more. Just when you think you are free from twitching then the dreaded thumb twitch pops up and the anxiety starts all over.

During my first clinical I knew I had twitches in my calves and arms that I could feel and see but my neuro who was sitting across the room from me identified more in the webs of my fingers. I couldn't believe he could see them even when I didn't, he said they were popping all over the place when I didn't even realize it. "Those aren't *** twitches, no weakness, no atrophy, come back and see me in 6 months for a follow-up."

I know that I have become so fixated on my hand at times recently I can feel my pulse in different areas which makes you think I am having a hotspot....CRAZY!
HeyHeyJJ
Interested
Interested
 
Posts: 11
Joined: October 21st, 2013, 5:38 pm

Re: My story after 6 months of twitching

Postby nervous nel on April 8th, 2014, 10:37 am

I totally understand the panic that rears it's ugly head everytime a new twitch appears :cry: it's so hard to keep calm when your minds screaming at you to panic! But remember This too will pass.... :)
nervous nel
Member
Member
 
Posts: 33
Joined: February 25th, 2014, 2:17 am

Re: My story after 6 months of twitching

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 5 guests

cron