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Twitching Returns with Multi simultaneous hotspots - SCARED

PostPosted: August 25th, 2014, 7:23 pm
by ScaredWifesHubby
Hello everyone,

I'm putting this question out here for my wife (since she is alergic to computers :wink: ). She is seriously scared right now, so I'm hoping I can find some others who may have shared her experience, which might ease her worring. I have tried searching the forum quite a bit, but haven't found something she feels is anaolgous to her situation. I'm hoping it is just a matter of the descriptions not being worded such that I could find them, and that there may be others out there who can share similar experiences based on what I describe.

She has been dealing with concerns over twitching for 2 years now, and for the most part, it seemed to be similar to what others describe here. She saw a neuromusclar specialist about a month into it (23 months ago), had a clean EMG about 3 months into it (22 months ago), and a final office visit about a year ago. He gave her the BFS diagnosis. At first it didn't help and she still worried painfully for over a year, finally after about 18 months she came to terms with it, and even though it didn't go completely away, she learned to carry on fairly normally, until recently.

Then, about a month ago, her twitching came back with a vengence. She is really scared now, because this time it came back differently than it had before. This time she has multiple hot spots all over her feet and in her calves, often occurring simultaneously. She'll get several (3 or 4) hotspots firing in her feet at the same time, or back to back, or back and forth, and it seems one or more of them are going off all the time. Then she'll get a hotspot in her calf, then on the side of her calf, then in her thigh, then on her knee, and these will just keep taking turns going on and on.

This is much different than before, where she might have one in her foot for a few days, then it would go away, then she might get one in her right calf for a couple of weeks, then it would go away, then one on her knee for a while, then none for a while, etc. But it always seemed to be one place at a time with accompanying random twitches elsewhere, and not for the whole day, and would eventually go away after a few weeks before moving on to a new spot.

She is concerned because she feels like this represents a progression. Like something is impacting more and more muscle/nerve groups and impacting them in a more continuous and serious way. On top of all this, she feels her feet are often "near cramping" and could go into a full blown cramp very easily if she moves or bends them a certain way.

I have read where others have hot spots, but they seem to be more like what she used to have. One at a time, with other more random twitches accompanying it. If anyone has an experience similar to hers described above, I would greatly appreciate hearing from you so I can share with her and hopefully show her this is just another version of the same thing. The more people with similarities, I think the better she will feel.

Thanks so much for reading this and taking the time to respond.


Re: Twitching Returns with Multi simultaneous hotspots - SCA

PostPosted: August 25th, 2014, 7:43 pm
by bobajojo

Your wife's situation sounds so much like mine. I've had BFS for 3+ years now. I've been to two of the best neurologists in the country at Mass General Hospital and the Mayo Clinic. They don't care about my twitching, they have assured me it is benign. I twitch all over 24/7. Calves, feet, thighs, elbows and eyelids NEVER stop. I have had my biceps both twitching for the past 7 months. My tongue twitches everyday. Right now I'm sitting on my couch with my back against the backrest and I can feel it popping away in several spots. I used to obsess about my twitching. But lately, I've seen my mom's calves and feet twitch just like mine. I also have a twin brother who has it too so whatever is going on with me, they have it to. The funny thing is, they have no idea. They can't feel it but I can clearly see their legs twitching away. But, please show these videos of my benign twitches to your wife because nothing is better than seeing it on video!

I hope this helps her. -Matt ... QqvqJUE9Hw ... QqvqJUE9Hw ... QqvqJUE9Hw ... w&index=12

Re: Twitching Returns with Multi simultaneous hotspots - SCA

PostPosted: August 31st, 2014, 10:59 pm
by ScaredWifesHubby
Thanks for the feedback Matt. I appreciate you taking the time to respond so quickly. You certainly do have a boatload of activity going on there!

It sounds like yours started that way from the beginning and has been consistent throughout your experience. Her's was more intermittent and located in one place at a time for her first two years, and only recently exploded to having multiple hotspots at the same time. Not sure if that means anything or not - having a rapid and drastic change after so long?

Great to hear from you Matt, and I appreciate yor response.

Has anyone else out there had a similar experience? If so, would love to hear from you as well.

Re: Twitching Returns with Multi simultaneous hotspots - SCA

PostPosted: September 8th, 2014, 2:19 pm
by misterjuanperalta
A neurologist (name unknown) was asked and he responded:

If the twitches are primarily in the calves and eyelids (for example), with some roving twitches elsewhere, is
this a positive sign? It seems stress related and/or benign twitches occur most often in calves and
eyes. Correct?

Yes, in most cases this pattern suggests a benign problem. I hope this is useful to you and to others.