Newbie and nervous, or freaked

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

Newbie and nervous, or freaked

Postby Tohapane66 on May 15th, 2014, 3:27 pm

I have been reading this site for some time. But as yet have not contributed. This is a great website and has been helpful for me when I been in a state of despair and/ or fear. The latter is one of those times for me know, and why I am posting.

I am a male in my mid 40s. About five months ago my fasciculations began. Like many here my fasciculations were initially only in the arches of my feet and calfs. These have subsequently spread to other areas, like my thighs, arms, abdomen and neck. The latter are never a source of constant twitch like my calfs and feet. I'm not sure what the cause of mine are, possibly strenuous exercise or a virus.

Like most here I feared the worst at the start, some form of MND. A simple search of the internet on fasciculations leads you straight to this. Initially, like many I tested myself for some form of weakness. I was constantly checking whether I could walk on ball of foot or heels, stand on one leg etc etc. I probably did myself harm doing these exercises.

I have visited a couple of neurologists, had two sets of nerve conduction test and EMG (at one month (legs) and three months (arms)). Also MRI and comprehensive blood testing. All my tests were normal. Thus seemingly leaving the cause of my fasciculations as unknown and thus categorised as benign fasciculation syndrome (BFS).

Although I felt great relief after each test, some doubt continues to persist in my mind. I know this is the curse of many here (or has been).

I know some say laugh at the twitching or try not to be distracted. That is fine, and I could do. However, for me I seem to be experiencing considerable pain in muscles, particularly forearm, tricep and near elbows. It is harder to laugh off these symptoms.

More recently, the twitches in my feet seem to have stepped up a gear, just when they seemed to have calmed down and I was barely noticing them. They are very strong and are moving my toes around. I have had this before, but never lasting more than a few minutes. These are far more persistent. This is really freaking me out. So after a period of calm my anxiety has now stepped up considerably.

Just wanting to hear from others who have experienced movements of fingers and or toes and how they might distract themselves. At the moment it is making it difficult to sleep as the movements are keeping me up. Btw I have managed to get this far without use of drugs, but wondering if my time has come to succumb.

Appreciate any advice

Thanks Tom
Tohapane66
Member
Member
 
Posts: 28
Joined: April 23rd, 2014, 2:47 am
Location: Australia

Re: Newbie and nervous, or freaked

Postby nrwtwitcher on May 16th, 2014, 4:54 am

Hi Tom, I have the same problem with my feet. I am twitching now nearly 8 months. Since march me feet drive me absolutely crazy. Every toe has his own life. My little toes spread away sometimes and my big toe also. I have twitches all over my feet: toes, ankles, arches, soles. In addition my feet cramp by day and night. I am trying now Gabapentin in a very low dose, but I am going to take a higher dose now. Before I have tried Limptar (quinine) it helps for about 2 weeks, than I didn`t feel any effect. Many people at this forum told me, that fasciculations at feet and calves are normal by bfs.
nrwtwitcher
Selfless giver of time
Selfless giver of time
 
Posts: 162
Joined: January 4th, 2014, 4:39 am
Location: Cologne/Germany

Re: Newbie and nervous, or freaked

Postby Tohapane66 on May 17th, 2014, 1:50 am

Hi thanks for the words and advice
After 36 hours the party has come to an end - my toes have finally come to a stand still as the fasciculations have calmed significantly.
This bfs is a strange creature, often throwing surprises when I think I can be surprised no more. Surprises I could do without, but am happy to endure given the alternatives.
This journey has been a harrowing at times, but this website has been a fountain of knowledge and I can't speak highly enough of the great contribution it has made (by all of you). It has definitely been my voice of reason and calm.
Tom
Tohapane66
Member
Member
 
Posts: 28
Joined: April 23rd, 2014, 2:47 am
Location: Australia

Re: Newbie and nervous, or freaked

Postby Tohapane66 on May 17th, 2014, 5:56 pm

Unfortunately my toes are back to party mode again - depriving me of sleep again. Very frustrating :(
Tohapane66
Member
Member
 
Posts: 28
Joined: April 23rd, 2014, 2:47 am
Location: Australia

Re: Newbie and nervous, or freaked

Postby elliottok on August 13th, 2014, 7:39 pm

This *beep* sucks, doesn't it? I had a few months of relative calm, but back twitching like crazy now. Hate it.
elliottok
Senior Member
Senior Member
 
Posts: 50
Joined: January 17th, 2014, 1:54 pm

Re: Newbie and nervous, or freaked

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 0 guests