Appointment at Washington University Apr 30th

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Re: Appointment at Washington University Apr 30th

Postby Ghayes420 on April 30th, 2015, 8:56 pm

Juan, no, I don't get much pins and needles. Mostly pain, numbness and fascics.
A very proud fasciculator since 8/14/2011. :)
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Re: Appointment at Washington University Apr 30th

Postby leaflea on April 30th, 2015, 10:48 pm

I think this is indication bfs is getting more info/science behind it as Buzznerd found that study with bfs/bfcs and most who also had SFN.

Mitra, same here, bee stings and random numbness, limbs falling asleep, all kinds of weird things - like a haunted house I am really.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Appointment at Washington University Apr 30th

Postby Buzznerd123 on May 1st, 2015, 4:40 am

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Last edited by Buzznerd123 on May 1st, 2016, 12:05 pm, edited 1 time in total.
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Re: Appointment at Washington University Apr 30th

Postby Little Lost on May 1st, 2015, 8:58 am

Hello Buzznerd,

Your research is always well balanced and informative. However have PM you directly concerning an issue. Problem is I am not sure if it went through. Seems to be sitting in my outbox. Not sure if the PM service has a glitch as it had before. If you dont get anything please try to PM me back.

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Re: Appointment at Washington University Apr 30th

Postby Ghayes420 on May 1st, 2015, 9:53 am

"My academic researcher/doc told me twitching is not a feature of pure SFN but is seen very occasionally, this was doubled by scboy's hopkins feedback. "

Make that triple confirmed by the head of neurology at Wash U: "Fasciculations are not a primary finding in SFN traditionally, but we seem to see more and more cases of SFN that have fasciculations in the symptom profile."
A very proud fasciculator since 8/14/2011. :)
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Re: Appointment at Washington University Apr 30th

Postby Nytviolet on June 10th, 2015, 7:34 pm

I'm here to tell you that (following skin biopsies in my left leg) that I was dx'd with SFN at all three sample sites ...the upper calf, the lower thigh above knee and mid thigh. I found that mine was a result of glucose (not gluten) intolerance that I've probably had for some time. I researched SFN and found that in many cases it also involves the larger fibers (including autonomic and motor). I've also been told that I have EBV, fibro and bony protrubances / foraminal narrowing C5-6 if memory serves. All symptoms (twitching, burning, muscle fatigue, diminished reflexes (slightly) and (to my eyes) a negligible loss of muscle bulk, all on the left side). The twitches / fascics and fatigue began 18.5 years ago, and I've had previous bloodwork over the years with normal glucose, but the newer symptoms may very well be related to glucose levels (which accompanied a very high stress, sedentary job where it's always a pot luck or birthday party with never ending cake and snacks-- thank God I now work from home). I have a slightly weaker left foot which appears to have a circular indentation on the inside below ankle bone, yet I still walk fine, can stand on toes, and have no clinical deficits (no babinski). I'm getting older and have probably always had a weaker left foot/leg, but like most of us I'm hyper vigilant, so a mole hill becomes Mt Everest. I try to keep anxiety under control, and feel that I have a constellation of symptoms from different sources (SFN, anxiety, cervical damage, scoliosis, fibromyalgia, etc). I may never get definitive answers, but I'm tired of searching. For some of us, this may be a lifelong situation, and if you've gone years without obvious, debilitating progression, you could very well have multiple causes. Wish I'd known about the SFN / glucose situation sooner though. Be blessed :)
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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Re: Appointment at Washington University Apr 30th

Postby raindog on June 13th, 2015, 6:00 am

My neuropathy is always mentioned as motor neuropathy. I do have very bad pins and needles in both arms and both lower legs, Chronic nerve pain in both lower legs. Deep tendon reflexes are absent on both legs at knee and ankle. All put down to as chronic denervation and a neurogenic process....i suppose that is a way of saying we really dont know what the f'ck is happening.

In the centuries since these neurological diseases were named i sometimes wonder what strides the field of neurology has actually made, if any. :?
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Re: Appointment at Washington University Apr 30th

Postby Nytviolet on June 2nd, 2017, 4:34 pm

I have SFN as well (diagnosed about 4 years ago through skin biopsies of the leg). I'm not diabetic, nor do I drink, but I failed a glucose tolerance test -- badly. I also have a history of CFS/Fibromyalgia and I do feel weakness, especially on the left side. With 20 years of twitching. 4 years of documented SFN and 3-4 years of limb fatigue, I'm just tired of the whole symptom complex. I've never had an EMG (last visit to neuro was 4 years ago and he refused to order one). I have some muscle loss left calf and foot, but can still walk on my top toes, heels, and all the other stupid self-tests I put myself through. All I know is this: I'm *beep* grateful that I awake each morning able to move all my parts. Glad you finally got some answers and hope you'll stay in touch.
2 Timothy 1:7 For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
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