Found this on Medhelp... thought it might help some newbies

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Found this on Medhelp... thought it might help some newbies

Postby WitchyTwitchy on November 7th, 2006, 11:32 am

Dear Doctors:

I hope you will tolerate this question - I feel it is valid and I have been trying to get on here for YEARS!

I have had a "fasciculation syndrome" for app. 4 years. It started with a burning neuropathic pain running down my left arm, left-sided otalgia (stabbing), and strange water-droplet sensations on my calves. At this time I also developed oral sores of all varieties, which I had never had before. I felt "viral." I was 35 years old at the time, sleep-deprived, stressed after the birth of my 3rd child. I had enjoyed perfect physical and psychiatric health my entire life.

This continued for a year - off and on. The following Summer I had a migraine which has been labelled "acute cortical insult." This included visual disturbances. The worst was over in a week. I continue, however, to live with sporadic low grade visual disturbance (floaters, photophobia, dryness). During this migraine I got calf twitches. These twitches persisted 5 mos. when they spread systemically -- widespread, diffuse, continuous. Soon thereafter, I began to have cramping, nerve pain, parasthesias, dysthesias, subjective weakness, you name it I experienced it. And now, 4 years later, I still experience a lower grade version of all the above-mentioned symptoms.


It (the diagnosis of benign fascics) has been hell on me and my entire family. I cannot believe I have a condition which is this pesistent, this chronic, this incurable! I suppose the good news, if there is any, is that I won't die from this. But that doesn't diminish the amount of suffering that is entailed with these types of syndromes. And to have absolutely no answers is particularly difficult as you can't even label it.

I, like others, have had normal EMG, MRI, and bloodwork. I know they have tested numerous times for autoimmune illness including Lupus and Sjogren's. My neuro exam (I could do it in my sleep at this point) is normal.

If you have any ideas they would be most welcome. I have seen probably ever doctor possible (ENT, neuromuscular, neurologist, rheumatologist, oral pathologists, infectious disease, among others) searching for answers. I don't understand how one can have SO MANY SX and yet all tests are normal? How can we have symptoms of a peripheral neuropathy or sensory neuropathy without actually having a neuropathy? Could this be a bizarre Guillan Barre aberrant? Could there be an underlying pathogen at work here which still has not been identified?

Thank goodness I had been married 10 years when this struck and my husband can testify that I am not a "whiner," and that I am not making this up. Many of us get accused of doing this to ourselves by "focusing too much" on the symptoms, etc. Stress, fatigue, and acute illness do worsen my symptoms, but they do for many conditions, not just neurological. For some reason neurology patients frequently get labelled "neurotic" I have noticed. And I am not obssessing on ALS as some with these twitchers do. Reassurance that it is not ALS is not what I am looking for. Whatever this is is bad enough in and of itself.

There is a strong need, I believe, for neurologists to begin paring up with other types of doctors (this seems to be an emerging field - i.e. neurovirologists) in order to come to answers to these "mysterious" syndromes. Doctors on this forum frequently say that fasciculations often/usually resolve, but I ask on what are you basing that? There are many who report twitches (when I say twitches I speak of the entire spectrum of symptoms) of 10, 20 + years and precious few who speak of cessation. Many do report improvement, however.

Thank you very much for responding and providing the community with this service.

Respectfully yours, Maureen McLaughlin, Dipl. Ac, NCCAOM





Dear Maureen:

I am not sure what question you are asking as it seems that your posting is a comment on the disease of benign fasciculations. If I knew the answer I and others would be telling you. The only etiology is that approproximately 30% of people get it from a viral illness. The rest we are uncertain. Most people have only weeks to months of fasciculations and they go away on their own. But, you and many others fall into the category of having them for years (me too!) There are no medications that really help, benzodiazepines help but not completely. It is psychologically nerve racking on the the person with these. Doctors will tell you not to worry and that eventually they will go away. They do not make you more prone to develop ALS. There is actually little that I can say about them. They are a curse that has to rhyme or reason to length of stay or why they chose you.

Sorry, that I can't be more forthcoming with answers, but there are none. If there were, I would answer them for myself.

Sincerely,

CCF Neuro MD
Smiles,

Vanessa
WitchyTwitchy
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Found this on Medhelp... thought it might help some newbies

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