BFS and Sense of Smell Connection?

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OnyxSnakesteffaniet

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Hi all,I have been reeding posts for a while now and I have got a lot of reassurance, thanks to all contributors. This is my first message because I do not find any connections between sense of smell and BFS. My bodywide twitching started more than 8 month ago. It spread from the right calf to the whole body within three weeks. At the right calf it is 24/7, left calf and feet are also heavily affected. But I feel (and see) random fasics in arms, trunk and face as well. Also, a few times I got twitches at the left tip of the tongue that I both felt and saw in a mirror. There is migrating slight pain in my right leg and fingers of both hands. Also, I sometimes have a tight feeling in my left calf. I had two clean EMGs of a couple of limb muscles three weeks and three months after onset but none of the bulbar region (at that time I did not experience the tongue symptom that really scares me because of its possible meaning). Also three clinical exams didn't reveal anything => BFS.Half a year prior to onset of fasciculations I partly lost my sense of smell. The day before that occured I felt like having a cold which I then did not get. I can still smell but some odors are not as strong as they were before (e.g. coffee). This symptom is called hyposmia. It is known that hyposmia might happen at the onset of Parkinson's and dementia but it is not typical for MND (although mild forms are mentioned in the literature).Now I wonder if someone else with BFS has problems with smelling or if this points to something else...Kind RegardsSteffen
 
Hi Steffenhyposmia actually could be of two origins - local and central one, i.e., local means you have your smell nevres burnt or dead (Like I had once in my youth, when I was working on water treatment station and smelled ocassionalyy a chlorine gas without mask - boooo! I had my smelling sense impaired for a few years then), and central is assosiated with deterioration of upper brain processing centers (which as I assume happens in PD or dementia because those diseases are rather central and assosiated with physical deterioration of certain regions in the brain).Because you do not say nothing about being an old age person (for whom PD and Dementia are very likely) and because you mention a cold-like sensation in your nose before all that started, I can suggest that your hyposmia is rather of local origin. We know that for some of us BFS had an infection as a suspected trigger. Certain viral infections might attack nasal nerves specifically (I am not 100% sure but it looks like polyo virus affects them or so...) or there might be any external agent exposure anyway.all the rest of your description till now fits BFS picture very good (migrating pains, twitches, tightness etc.)Do not worry abt tongue - we have a good bunch of people here with twitchy tongues, all of them are OK.My best regardsYulia
 
Hi Yulia,thank you for your expanations. In fact, I am not that old (43 years) but too old for MND to be out of reach. I don't think that my symptoms are a random coincidence. For what I know I can exclude any external agents. So maybe there is an autoimmune reason.Best RegardsSteffen
 
Hi all,I forgot to mention that I am suffering from a patulous Eustachian tube. I hear my voice different on the left ear. Otherwise hearing is fine. That started only a year prior to generalized fasciculations and some month before hyposmia. What makes me nervous is that a reason could be a weak muscle. EMG of the limbs was fine but no EMG of the bulbar region was performed. Is there anyone else with fasciculations and problems with the Eustachian tube?Kind RegardsSteffen
 
Steffen,You don't need an emg of the tongue. I showed Mayo my twitching tongue and they said they would only EMG it if they found abnormalities elsewhere. They didn't. Just like you. -Matt
 

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