BACK WITH UPDATE - 4 months in

[Elizabethm12]

Hello everybody. Thank you in advance to everybody acknowledging my post. I will keep this as short as possible as I’m aware many of you are busy dealing with other people’s queries.

I’m back after posting a few months back. Below is a summary of my symptoms. I’m happy to report I took all of your advice on board and managed to turn my anxiety around. However, I’m back with a few questions and an update.

Background: 4 months into bodywide twitching. Started off as big thumpers all over the body including thighs, palmar brevis muscle (strong enough to move pinky finger) feet, arms etc. They have now settled into subtle twitches that I can still feel but the strength and frequency have calmed down a lot. Sudden movement of muscles such as coughing, sneezing or turning around in bed causes a fire of twitches that eventually ease off.

I am one of the typical people you read about who stumbled across ALS on google after trying to self diagnose before waiting to see a neurologist. The anxiety then spiralled out of control for a month or so and I became completely convinced I had ALS. I saw 2 neuros (one was a neuromuscular specialist) - I’ve had 2 NORMAL EMG’s - the only abnormality was the presence of Fasciculations in a few muscles. No prominent features of a motor neuron disease to quote my reports. I’ve also had clean neuro exams showing ever so slightly brisk symmetrical reflexes. I’m young (21) and anxious which has a lot to account for.

I had a whole range of symptoms. Perceived weakness that seemed to change between hands. Extreme muscle fatigue, tremor, exercise intolerance, emotional incontenince, poor appetite. I couldn’t walk down the street without my calves aching and shaking. I at one point was convinced I was slurring my words and checked my tongue daily for twitching. I decided to trust my neuros in the diagnosis of BFS. It’s now been around 6 weeks since I tried my best to let go of the ALS fear. I can happily report a decrease of twitching, I regained the ability to walk down the street without my muscles aching and shaking, the jerking of muscles calmed down and I felt overall much more positive about the situation. I’ve now however developed what feels like a ‘pre cramping’ pain that feels like a cramp is about to start but never happens especially in my left hand (where I’ve experienced a big thumper twitch that moves my little finger) and in calves.

My question is - although I still twitch throughout my body and have very much the same symptoms just much less obviously. Can I put the idea of ALS behind me now? Is nearly 5 months of these symptoms with no clinical weakness enough to be sure this is just BFS? I’ve read posts here of people who presented with body witch facis and went on to develop clinical weakness etc. Is there a timeframe of having twitches without weakness before it can be fully diagnosed as benign. Do I still have the potential to develop weakness?

If I had 2 clean emg’s whilst having Fasciculations - does this completely rule out the chance they could be caused by ALS?

I want more than anything to put this behind me. Sorry to ramble. Many thanks to you kind people for shedding some light on my worries.

Thank you!

 

[ShiftKicker]

Mod note- previous thread here:https://www.alsforums.com/forum/do-i-have-als-als/41854-needing-some-guidance.html

Moved to DIHALS.

 

[lgelb]

Hi Elizabeth,

I'm glad you want to put this behind you. The best way to do that is to focus on what's in front -- beginning new projects, passions and pastimes. Some people your age also consider volunteerism with the less fortunate to put their own situation into perspective.

2 clean EMGs and several months of peak-to-reduced twitching with no weakness leads us to say that you can indeed move on without fears of ALS. It is not unusual for muscles that have been overstimulated as yours have been to continue to make their presence known. Using stretching, exercise, diet, hydration and stress-reducing regimens such as meditation and/or walking, I have no doubt you can significantly reduce or eliminate the twitches.

Best,
Laurie

 

[Elizabethm12]

Thank you so much for a lovely response, Laurie.

Do you think if this was of a sinister nature I would of developed weakness by now?

As for my muscles making themselves known, I’m getting some aching and crawling sensation up my spine and across upper left side of back. As well as aching soles of feet. I’ve read this is fairly common amongst the BFS community.

Once again thanks for your reply.

 

[KimT]

Everything you posted points to BFS. There is a variant of BFS that includes cramps but it is still benign.

Your clean EMGs means you do NOT have ALS.

Please put this forum behind you. If you need support, go to the BFS forum. There are plenty of members there who can validate your symptoms.

I'm glad you don't have to be here any longer. Best wishes.