My experience

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 experience

Postby anita on February 9th, 2013, 4:53 am

For me it all started with Raynaud's phenomenon (cutting of the circulation in the fingers triggered by cold temperature or emotional stress), then I developed drenching night sweats and fatigue. I had every blood test available under the sun, had CT scans, MRI of brain and spine and even a PET scan (rules out cancers). They were all negative.

Then shortly after, I started having fasciculations. They were first in the left calf and then really spread everywhere, progressively including my hands, arms, thighs, feet, abdomen, back and occasionally face and tongue. It has been 7-8 months and they have never stopped. I literally have fasciculations 24/7. I get the joint pain, muscle pain, muscle fatigue, cracking joints, muscle jerks. The night sweats have stopped completely but the Raynaud's is here to stay. I suddenly (at the beggining) became very cold intolerant, although up until I got sick, around May last year, I could not tolerate heat.

I saw multiple specialists including 2 neurologists. I have a normal neuro exam, except exaggerated reflexes in the knees, and had normal nerve conduction studies and EMG in Septemebre last year. I was reassured that it's not something ominous. No one could tell me what it was but BFSwas the preferred diagnosis together with idiopathic Raynaud's (which really means nothing to worry about). I'd be happy with that!

I'm having another EMG next week and waiting for it anxiously. I have enjoyed really good health up until last year. The only other thing I had since in high school (many years ago) was sleep paralysis. Never really bothered me as I literally grew up with it.

Has anyone else had any similar experiences? Would love to hear from you. Many thanks!
anita
Member
Member
 
Posts: 38
Joined: February 7th, 2013, 7:11 am

Re: My experience

Postby aztwitchy on February 9th, 2013, 2:43 pm

Hi anita...i have had the exact same experience. Identical progression, identical symptoms, identical experience. tons of bloodwork, 2 emg\ncv tests, MRI of brain and spine...neuromuscular specialist says no known cause but its not something ominous.

stick around anita...lots of people just like you here with similar experiences.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
aztwitchy
Hero
Hero
 
Posts: 451
Joined: December 3rd, 2012, 5:18 pm

Re: My experience

Postby anita on February 12th, 2013, 1:04 am

I will be having my second EMG tomorrow and feeling very nervous about that. My fasciculations are now a lot worse and spread than 5 months ago when I had my first EMG, and although I cannot see and atrophy in my hands, the fact is my rings are getting so much bigger these days, to the point that I might lose them if I'm not careful. All this worrying is so limiting and overwhelming :(
anita
Member
Member
 
Posts: 38
Joined: February 7th, 2013, 7:11 am

Re: My experience

Postby christo on February 12th, 2013, 1:54 am

Hey Anita,

I will also have my follow up EMG today, my last is 4 month old. We are in the same boat :D
I am sure we will be fine.
christo
Hero
Hero
 
Posts: 349
Joined: October 27th, 2012, 5:04 am
Location: France

Re: My experience

Postby anita on February 12th, 2013, 3:27 am

Hi Christo,
Good luck to you! I know it should be all good for both of us. Let me know how it went!
Anita
anita
Member
Member
 
Posts: 38
Joined: February 7th, 2013, 7:11 am

Re: My experience

Postby christo on February 12th, 2013, 11:11 am

I am OK, and I am sure you are too, keep us updated.
christo
Hero
Hero
 
Posts: 349
Joined: October 27th, 2012, 5:04 am
Location: France

Re: My experience

Postby Rtw on February 13th, 2013, 1:26 am

Your rings likely feel bigger because it's sooo cold:) I know that when it's hotter, my hands are much more meaty looking :lol:
Rtw
Member
Member
 
Posts: 43
Joined: April 1st, 2012, 9:32 pm

Re: My experience

Postby anita on February 14th, 2013, 7:39 am

Thank you all for your encouragements :)

I had my EMG, and although I don't have the formal report, the neurologist who did it reassured me that it all looked fine. He caught a few fascics but no signs of denervation, so at the moment it is all good :D. The neurologist who saw me was very nice and very patient and really listened to my concerns. He was very experienced with electrophysiology testing and saw many, many cases in his long career. My neuro referred me to him for the testing. He said he could never guarantee that I will not get MND (after all anyone could!) but he said it looked very unlikely at this stage. He thought I should carry on with my life as normal and try "to re-set my filters" so not to get bothered by the twitches.

I think we are all going through similar emotions but it is reassuring to see that we are still OK after months and months of twitching.

All the best to everybody! Cheers,
Anita
anita
Member
Member
 
Posts: 38
Joined: February 7th, 2013, 7:11 am

Re: My experience

Sponsor

Sponsor
 


Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 3 guests