New here, Fasc's and cramping not yet diagnosed

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New here, Fasc's and cramping not yet diagnosed

Postby NYGAL on August 17th, 2014, 7:27 pm

Hi everyone, I am a 54 year old female who began this journey in March of this year. Initial symptoms began 2 years ago with a feeling of weakness in right arm and lots of sensory symptoms. Fast forward to March of this year. Perceived weakness in both legs and right arm and hand. dropping things, body wide fasiculations and bilateral foot cramping.
Upon initial exam my neurologist noted brisk reflexes and was able to observe fasiculations in both calves. I was sent the following day for an EMG . On follow-up I was informed that the fasiculations were observed on the EMG as well as nerve root irritation at l5-S4 . Those finding could explain lower limb fasc's but not those in upper body. So this was not a clean EMG per se but my neuro said that there was nothing yet in the EMG to indicate ALS. My follow-up last week showed a normal neuro exam but the fasc's continue bodwide.
I requested a follow-up EMG as 4 months have passed since the initial testing. I was advised that it was not necessary at this time but we will revisit my symptoms in 3 months and make a determination at that time if another EMG is necessary.
My neurologist has not yet made a diagnoses of BFS or BCFS. He did tell me that without atrophy or weakness ALS was probably not likely but nothing is certain.
He did mention that sometimes cramping and fasciculation may precede weakness in some patients. Hence follow-up is recommended . My question is for those members with fasiculations and cramping . How often do you follow-up and how often do you have repeat EMG's? Thank you all !
NYGAL
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Re: New here, Fasc's and cramping not yet diagnosed

Postby Little Lost on August 19th, 2014, 8:39 pm

Hi NYGal,

Sorry to hear you are having a rough time, and I hope you get answers soon. It is not a nice road to be walking, and before my twitches showed up over 3 years ago I never remotely suffered from any type of health anxiey. Here is the story of my follow up in terms of EMGs.

I chose a neuromuscular consultant that was part of a team that collectively diagnose about 40 MND cases a year, and act as a second opinion service for many more. I wanted the organ grinder so I could be confident in his assessment.

My first EMG which was extensive, showed only fasciculations and my clinical and reflexes were clean. I was told NO follow up was needed, especially as I had already been twitching for a year beforehand. They diagnosed BFS. However the consultant doing the EMG said it was good to have these initial recordings, as any future EMG can be compared to it. Like a base reading. Of course I took this to mean I WOULD DEFINITELY NEED another EMG.....bias interpretation.

So I did go back and asked them to redo EMG. That was 11 months after the first one. Same machine and same tester, i.e. the neuromuscular specialist. No changes since my first test. Strongly advised to go away enjoy life and I had no sign of MND. No need for follow up.

Did I listen...of course not....A few months later I had trouble out running, TA muscle developed bad cramping which made my foot flap down and transient slightly weak for half an hour......, panic .......off I went for a second opinion with a different consultant, again a MND specialist,, and another EMG which was extensive. Nothing found completely clean. (Told me as I was leaving that I looked very like Angelina Jolie, which immediatley made me realise what an honest , truthful , keen sighted chap he must be.) hee hee what *beep*, I look more like girl interrupted on crack cocaine and aged some, and if that isnt bad enough I always forget to remove the latex lab gloves I use at work to tie my hair back with ( i.e. to substitute for the hairband I never seem to have), ...and then I am on the train home and someone is sniggering at the rubber glove hand still sticking out my ponytail. It is worse when I use the bright blue disposable nitrile surgical gloves....Angelina Jolie...really those prime days are long gone, but like chicken soup it made me feel much much better...felt like an ALS free super model for a few days anyway......but it always comes back...the doubts about MND.

Lastly I went to London for a consultation with another MND specialist. He accessed all my previous EMGs and tested every reflex I had, and some I didn't even know existed. Again the all clear. He told me I was torturing myself and the first EMG was the only EMG I had ever needed. In fact he wouldn't even have done one as clinically there was nothing to merit it.

Obviously your neurologist knows your case best, and I guess you are having to play the waiting game. If you look through the forum you will see that some people have EMGs six months apart and others only one, some never. It varies from case to case and consultant to consultant.

Stay strong and remember you can get lots of support on this forum while your going through this. Hopefully you will see from this site that fasciculations are quite common, and aren't as closely associated with ALS/MND as google would have you believe.

Lastly there are lots of folks on here that can help you through your wait, people a lot more sensible than me, people that would never dream of sticking rubber gloves in their hair.

Take care and welcome to this site.

Oh and PS the crack cocaine was a joke.

Hx
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Re: New here, Fasc's and cramping not yet diagnosed

Postby NYGAL on August 20th, 2014, 12:53 pm

Hi,
Thank you so much for your warm welcome and reply. I am happy to hear that all has remained stable for you and your follow-up EMG's. I think it is a waiting game to some extent. Not sure what that magic number is where one can feel confident and sort of forget about motor neuron disease.
I do have complete confidence in my neurologist and will follow his recommendations.
It seems that cramp-fasciculation syndrome is a rare topic on these boards .I am not so concerned about the fasiculations or cramps and their affiliations with ALS, I am more concerned about pain control if the cramps get worse, I currently take gabapentin.
I notice that many members are getting multiple follow-up EMG's within short periods of time even with normal baselines. I don't quite understand the science behind that if one is only experiencing twitching with no other clinical signs of lower or upper neuron disease. I could stand on my head and my neuro would not order another one unless there is further clinical evidence of something sinister evolving.
Thanks again for your info, I truly appreciate you sharing your experience with me ! Stay well.

nygal
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Re: New here, Fasc's and cramping not yet diagnosed

Postby leaflea on August 20th, 2014, 6:17 pm

I am 47 year old female. At 46 in October 2014 after a very stressful period of many months, I started noticing fasics all over, googled, panicked but didn't go to even my GP for six weeks hoping it would subside or magnesium would take care of it. Had EMG in only one limb (my most symptomatic at the time) on 12/8 but couldn't see the neuro until 1/8/14 where I had a good exam by an ALS specialist. He told me he does not need to see me unless I develop weakness. He examined areas I swore I saw atrophy and declared I did not have any atrophy at all. Since then, I've had all kinds of symptoms including cramping in different areas and crazy vibrations in the legs and internal tremors. I was so freaked out by all this and what it was doing to me mentally that I sought counseling with a CBT specialist who is actually quite familiar with bfs! If it weren't for him, I'd have run back to the neuro at least 4-5 times with what I think is weakness. He is positive the doctor visiting, reassurance seeking makes us worse and I think he's actually quite right. SO, I've not been back and am now past the 10 month mark, still twitching and tremoring, but thinking I'm mostly okay.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New here, Fasc's and cramping not yet diagnosed

Postby NYGAL on August 20th, 2014, 8:27 pm

Hi, Thank you for sharing your background. Its interesting, I too get this feeling of vibrations in my both my feet and legs. My neurologist has advised the same. If I experience any signs of true weakness, then I am to call him before my November follow-up and he will repeat EMG. Until then it appears he is satisfied with his testing so far. I try my best not think about the "what if's" as there is not too much that can be done anyway. I am happy to hear that counseling has helped you and you are doing well.
I agree with your counselor. Focusing on this could be psychologically debilitating. I no longer focus on the symptoms. I did initially, but after speaking at length with my doctor and understanding best I could , I now know what ominous signs to look for. Hopefully they will never ever make an appearance.
My neuro told me " Upon exam you do not have ALS now, I cant guarantee that you will never get ALS but you are at no greater risk then the rest of the non-twitching population"
Fair statement... we never know what could happen . I could be hit by a bus while worrying about my twitching and cramping...
It is good to know that I am not alone with my cramping and fasc's. Thanks again and stay well !
NYGAL
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Re: New here, Fasc's and cramping not yet diagnosed

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