Very worried newcomer with possible foot atrophy

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Very worried newcomer with possible foot atrophy

Postby malisa on February 4th, 2014, 5:24 am

Hi everyone

I've been on this forum a lot and decided it is time to register since my worries are not going away but are getting worse :-(. I would like to share my story with you fellow-sufferers (excuse my english, it is not my native language), at east you will understand.

My fasciculations started about 10 months ago. Unfortunately my grandmother died of ALS so I knew about this disease. And, stupid me, I googled 'fasciculations' and immediately fear struck. I'm a bit of an hypochondriac. Since then, with ups and downs, I have experienced periods of serious fear, in which I was convinced I had ALS. I have seen a neuro in a local hospital but she is not specialised enough, she didn't even mention BFS existed. I now have an EMG scheduled but I'm thinking of canceling it. It heightens my anxiety level and no matter what the outcome is, it probably won;t do any good. If it's bad, I will worry more. If it is good, I probably won't stop worrying. Fasciculations are a true hell for a hypochondriac: all you can actually do is just wait to see whether you develop atrophy or weakness.

The last months the fasciculations (which have been all-over) have increased. I have them in my tongue also sometimes non-stop for hours. Which then puts me in another cycle of fear. Also, the twitching seems to focus lately on my left leg and especially left foot, nearly non-stop small fasciculations. What is A LOT worse, I've notices that I can't lift the toes of my left foot as high as those on the right foot. Now, I am not sure whether this has always been the case, I never tested this before (of course..., why would I). I\'ve noticed this first a few months ago. The good thing is it hasn;t gotten much worse. And also, the newest finding of the week, the shoes on my left foot are all a bit looser than on my right foot. This is really clear, in all of my shoes. This REALLY worries me because it was always the other way around, as my left foot is nearly half a shoe size larger than my right. Also, my balance when standing on the left foot is remarkably worse than on my right foot. I don't notice any serious weakness however (yet...). I do long distance running, but lately not too often, so I can;t really tell if my performance has declined. Has anyone here noticed atrophy of the foot?

So this is all on my mind for the most part of the day. The fasciculations are 'acceptable' in the long run and I can see how anxiety can increase them. But this thing with my foot freaks me out. I don't see how anxiety can cause my foot to actually schrink. It's driving me nuts and it is really affecting my life. I am stressed and grumpy. My husband is a rationalist. He says, you're a 36 year old female, ALS is too rare, you don;t have it, let it go. Sounds logical, but I just can;t do it. I'll just have to wait and see what's going to happen to my foot. Maybe if in 6 months there is nog progression and can find some relief.

Thanks for listening and good luck to you all!

Malisa
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Re: Very worried newcomer with possible foot atrophy

Postby Yuliasir on February 4th, 2014, 6:03 am

malisa,
anxiety can not cause your foor shrink.
but many of us have nonspecific edemas due to bad lymph and blood circulation (not only bfsers, just plain people). Are you sure that it is not that your right leg is swollen? slightly... just have a look on then at the evening, before going to bed. iOften edema is clear becasue of less prominent ankle bone.
I have a permanent one on my left leg, so my right shoe seems to be looser that left one.
also it is 100% NORMAl to have less balance on one leg, and often it is left one (same as for hands), and it is perfectly normal to have not very mobile toes on any leg. Unlike big apes (chimpanze etc.) we do not use your toes as holding and grasping devices, so they ar probably the least mobile digits in the body).
if your grandpa died from ALS, you may know than that first symptom is still loss of function, so to get your calve realy prominently atrophied, you need a foot drop first. You did not mention that so I suppose you have not.

if you do not have right leg edema, most probably, you have subcutaneous fat loss, which is very common in anxious prople causing them worry about the dents, atrophy etc.

Malisa, you virtually can not accept right now any reasonable thing your husband and other people say to you. This is due to the nature of fears and obsessions. yYou need either time and relaxation or professional help to get your crtiticality back.
And please consider, that even if neuro does not know about BFS, he or she is str\ill trained enough to find clinical signs like ckinical weakness and atrophy and distorted reflexes (becasue they happen not only in ALS). If your doctro did not noted any bad signs during exam, most probably you are Ok.
10 month after twitcing are considerred as well enough for development of prominent ALS signs if there are any prerequisites. Otherwise you may consider your twitches are rather bening.
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Re: Very worried newcomer with possible foot atrophy

Postby malisa on February 4th, 2014, 1:59 pm

Thanks for your reply yuliasir
You are right it's hard at this moment to accept the rational approach of mentally sane people like my husband ;-). I really need to snap out of this fear. Because even if I would develop ALS (which I know is not probable), i better enjoy life! My grandmother died of ALS when I was 8 years old. She had bulbar and progressed real quick, she died (euthanasia, thankfully well organised in the Netherlands) within 1 year of being diagnosed. It started our with difficulty swallowing and speaking. And before we knew she was bedridden. I feel so stupid sometimes for being so scared. I am doing an 8 week mindfulness training, which is really helpful in handling anxiety and enjoying life more.
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Re: Very worried newcomer with possible foot atrophy

Postby jebmd on February 4th, 2014, 9:19 pm

I would do the EMG-that was the only way that I could calm down. Actually, I was SO relieved that the twitches dies down to almost nothing for about 3 weeks-until all the other stressors in my life started acting up. My twitches had been going on for 3 months by then and with 2 relatives with ALS (47 and 80 something) I needed reassurance. Have you done the basic bloodwork-B12, Vit D, electrolytes, blood counts etc? Or an MRI? If the EMG is normal, (most likely with bodywide twitching), then you can move on. If it is not, then some planning needs to be done-all I could think about was how I would be looked after in my home if I had ALS. At 36 years old you are likely fine. My neurologist did use the term benign fasciculations (not BFS) and I have another EMG scheduled for March-my request. I think not knowing is worse.
Hang in there,
J
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Re: Very worried newcomer with possible foot atrophy

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