Nerve Hyperexcitability Disorder

[achamau]

Has anyone here been diagnosed with a nerve hyperexcitability disorder e.g. Benign/cramp fasciculation syndrome?

 

[blujon]

I havn't, but: In two studies published in 2004 and 2007, researchers from Southampton University suggested that a statistically significant increase in the hyperactivity of children occurred after they consumed common artificial food colours and additives from fruit drinks.[1][2] The list of compounds used in the two studies included a preservative commonly used in beverages, sodium benzoate, and six color additives used in foods: tartrazine, quinoline yellow, sunset yellow, carmoisine and allura red. On the basis of the 2007 report, The UK Food Standards Agency has revised its stance on these additives, informing parents of children that demonstrate hyperactive behaviour that removal of foods containing the six additives from their diet may have beneficial results on behaviour.[3] The European Food Safety Authority (EFSA)

 

[drjean]

I know from experience that what I eat does affect how poorly I feel...but I have other disorders though some are issues with my nerves not giving proper messages to the brain.

Hope you find some solution.

 

[achamau]

Thanks blujon and drjean for your input, I know that food can have a very negative effect. A couple of years ago I did a Passover cleanse and that helped a lot, but I am also seriously considering that it may be neurohormonal.

 

[KScottP]

Has anyone here been diagnosed with a nerve hyperexcitability disorder e.g. Benign/cramp fasciculation syndrome?

Yes, I had BFS first at age 24, just fasciculations. Then it came back again at age 34 with foot stiffness and lasted a lot longer, about 9 months, and went away. The second time I had a lot more symptoms including fasciculations all over the body, stiffness, and exercise intolerance which improved over time. I went to the doctor at first and he did an EMG, MRI, bloodwork and didn't find anything unusual. I had it a third time at age 41, and I am still suffering from it. It started with the twitching and stiffness in the same foot as the previous time, and has generally gotten less in that foot. However, it has spread to my face and I am having fasciculations around the face, lips, head, cheeks, chin, neck. I also have sleeping difficulties especially when the neck and face are twitching. I also feel like my tongue is stiff on and off and like my speech is very slightly off, but everyone I have talked to says they don't notice a difference. I am hoping to find other Christians who are struggling with this to see how they handle the anxiety in a Godly way. I know the textbook answers but there are few people who have actually experienced BFS. I find that it is very hard to not worry about the symptoms becoming something worse, in particular some form of motor neuron disease.

 

[brinny]

Yes, I had BFS first at age 24, just fasciculations. Then it came back again at age 34 with foot stiffness and lasted a lot longer, about 9 months, and went away. The second time I had a lot more symptoms including fasciculations all over the body, stiffness, and exercise intolerance which improved over time. I went to the doctor at first and he did an EMG, MRI, bloodwork and didn't find anything unusual. I had it a third time at age 41, and I am still suffering from it. It started with the twitching and stiffness in the same foot as the previous time, and has generally gotten less in that foot. However, it has spread to my face and I am having fasciculations around the face, lips, head, cheeks, chin, neck. I also have sleeping difficulties especially when the neck and face are twitching. I also feel like my tongue is stiff on and off and like my speech is very slightly off, but everyone I have talked to says they don't notice a difference. I am hoping to find other Christians who are struggling with this to see how they handle the anxiety in a Godly way. I know the textbook answers but there are few people who have actually experienced BFS. I find that it is very hard to not worry about the symptoms becoming something worse, in particular some form of motor neuron disease.

My heart goes out to you KScott. Praying for you. Welcome to CF (((hug)))