Newly Diagnosed

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Newly Diagnosed

Postby mstwitch on November 7th, 2003, 10:06 am

Hi Everyone! I have recently been formally diagnosed about two weeks ago after a long and difficult six months. I have many complex medical issues that were being sorted out when the muscle pain, twitching and weakness began. It was suggested to me that I look for a support group and talk with others who are going through the same ordeal as I. My hope is to be able to encourage and support others in the manner in which this group will no doubt support me. I am happy to be here!
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Postby Pole on November 7th, 2003, 10:09 am

Great, but what is your dx?
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BFS

Postby mstwitch on November 7th, 2003, 10:24 am

I'm sorry. Silly me...it's BFS.
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Postby Pole on November 7th, 2003, 10:28 am

Could you tell us what exactly are your symptoms? And what exams were performed (emg?). And who gave you a dx - was it a neuro? Maybe he told you something more about this condition and you could share it with us.

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Mayo Neuro

Postby mstwitch on November 7th, 2003, 11:01 am

My symptoms began with occasional charley horse-type cramps randomly in my calves. Then the night-time foot cramps began. The pain in my legs became almost unbearable with burning sensation, muscle cramping, muscle twitching, and feelings of weakness. Shortly after leg symptoms, my twitching began ALL over my body including my tongue. The upper body twitching does not hurt, however my legs continue to give me a great deal of discomfort and my tongue continues to twitch!
I was diagnosed at the Mayo Clinic after receiving an EMG study and an MRI of my brain. In addition to the twitching/cramping I also have a mild to moderate tremor in my lesft hand.
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Postby Pole on November 7th, 2003, 11:15 am

Sorry that you have so many symptoms and congratulations that's only BFS :)

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Postby garym on November 7th, 2003, 11:29 am

Welcome to the group, you've come to the right place. Sorry to hear about your problems, but great news that it is BFS. By the way, how old are you?

Gary
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Postby SusanSid on November 7th, 2003, 11:29 am

Thanks for sharing with us! Your symptoms are so familiar. I don't have the twitching of the tongue (have had it briefly for short periods, but it's rare), but I do have the cramping in calves and feet. There are times it's not noticable, and times it drives me nuts and is very uncomfortable.

I find that dehydration, stress, not taking my vits and lack of sleep make it worse. I'm in school right now, taking classes from hell and it has been really bad some days. However, I just move on and try and not get too caught up in it.

Do you take anything to help with the cramping? I'm curious what the docs at the Mayo Clinic said about BFS. Could you share what they said about it? Thanks and welcome to the website.
Sue
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Postby mstwitch on November 7th, 2003, 11:53 am

Thank you all for the warm welcome. I am 48 years old with three grown kids! Life is always busy and I am hoping to return to work in the very near future.
I have been put on a drug called Neurontin (to be increased every two-three weeks-maximum 900mg/day). My internist here has added Inderal a couple of days ago to address the tremors and migranes.
The Doctors at Mayo told me first of their concern of ALS with me as I presented to them with tongue twitches (which is rarely benign). After a very thorough work-up (2 emg's, MRI (spine and brain) and a careful evaluation of strength and reflexes) they were able to confidently diagnose me with BFS with no indication of Motor Neuron Disease at this time. I am to report, however, any new or different symptoms immediately to a Neurologist whereby additional testing may be necessary. The theory of the doctors I saw (head of Neurology at Mayo) is that BFS is an autoimmune response to a virus. There is no cure, treatment of symptoms is debateable, and remissions will occur.
I will remain positive, regain my strength (from other issues), and enjoy and embrace all that awaits me!
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