New and coming out of hiding

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

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New and coming out of hiding

Postby WhatNow? on October 10th, 2013, 5:13 pm

Hello!

I have been lurking around for a while now, learning a lot and being reassured by the symptoms I share with you. I will apologize ahead of time for the novel. This has been a very stressful several months and I have not really talked about it but with a few people.

I am a 42 year old mom with 4 kids, ages 14 to 2. My journey started in July with an upper eyelid twitch, which I paid no mind to until it lasted 2 weeks and my thumb joined the party, quickly followed by my lower lid, cheek and upper lip. Of course, I made the mistake of asking Google what was going on, and all Hell broke loose. I am a busy mom, for goodness sake, and have a child with special needs. My head went to that dark place that everyone's seems to go to. I was so worried about my kids, about needing to be there for my son past his childhood years. I still have bad days where I freak out some.

My tongue thought it would be fun to come along for the ride and has been an unwelcome passenger ever since, with twitches along the edges and a fizzy sensation on the top. I have spent more time scrutinizing my tongue in the past 3 months than I think I did in my 42 years. It looks asymmetrical and scalloped to me, with a high ridge in the center and a very slight deviation, but sometimes it looks better than others and that does not make sense to me. It functions well, but I cannot not help but worry. What made things even worse was looking for atrophy (or lack of, for reassurance) and actually finding it in my left thenar region of my hand. But I have also had symptoms consistent with ulnar entrapment, including tingling and numbness, though 2 nerve conduction studies did not pick anything up.

Anyway, fast forward to now, and my symptoms are widespread twitching, but it likes to hang around my feet and calves (mostly my right), my tongue (ugh), and my hands. I welcome the random ones much more, like the weird rumbly one I get in my side that reminds me of being pregnant. My feet feel like they are about to cramp most of the time, especially on the balls of my feet right beneath my toes, and even though I have not exercised much, I am chronically sore like I have worked out. I also have tingling, buzzing vibrating, and jerking. The jerking has been the most bothersome for me as of late, since it is a relatively new and intrusive symptom. My hand even jerks while driving and moves the steering wheel. I also feel wound up like a spring, and I am very jumpy. It is like my muscles are all tight and bound, and I find myself holding my body very stiffly. The neuro who did the EMG said everything was consistent with BFS except for the jerking, so I am not sure what that means.

I have seen a neurologist after a 2 month wait, who suspected BFS based on my symptoms and a film of my calf twitching, and sent me for an EMG. Unfortunately, they only did one area. It was the hand, arm, shoulder and neck on the side of the atrophy. It came back, as he called it, "pristine". As painful as I found the EMG, I wish they would have done my tongue and one of my feet. Then I could sleep at night. My blood work was all within normal ranges as well. My reflexes were somewhat brisk, but my basic neuro and strength tests were totally normal. I had an MRI with normal results as well. I also was tested for lyme and got an inconclusive result, and tested for heavy metals and do have quite a few on board, most not at high levels, but the overall load is moderately high. I am currently trying to weed through my options to find the safest solution to helping that issue. My tests for B12 came up slightly low, and my magnesium and ferritin were low. Supplements are not helping yet and my symptoms are not yet abating. My strength is good, though I went through a time when I thought I was weaker, but what it really was was a restless sensation, like restless leg syndrome but I will call it restless left side of my whole body. It felt rubbery with less than optimal endurance. I still have energy and function pretty much normally, except when this stuff gets in my head. Then it hangs around and haunts me until I have a good day. I have not had a good day in a while, symptom-wise. I am not sure what my trigger was, could be a host of things. Anyway, glad to finally say hello and looking forward commiserating. Thanks for reading!
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Re: New and coming out of hiding

Postby MarioMangler on October 10th, 2013, 6:04 pm

Welcome to the board!
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: New and coming out of hiding

Postby mwagner on October 10th, 2013, 6:40 pm

You are the total picture of BFS. I felt like I was practically reading my own bio. Mine started when I was 43 (2+ years ago).

Welcome.

Mitra
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Re: New and coming out of hiding

Postby WhatNow? on October 10th, 2013, 6:53 pm

Thank you for saying that, Mitra. Even though I know that what I experience falls into the bizzare realm of BFS, it is still so unnerving. Glad to know of a similar tale and that you are 2+ years past and still standing. :D
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Re: New and coming out of hiding

Postby mwagner on October 11th, 2013, 10:14 am

And you will be too...I am sure of it.

If you use the search bar for "jerks" you'll see how common that is with BFS as well. Doctors don't truly seem to understand the full nature of what we experience with BFS. It hasn't really been studied well. My doctor didn't even say I had BFS, just that my fasciculations were benign. I took that as the same.

I also have low B12 and also tested high for lead in a hair strand test. I have yet to do anything about the lead, but I will eventually. Chelation scares me a bit.

I also notice you have a two year old. My son was two (almost 3) when all of this started for me. There seems to be many, many on this forum that have young children. Maybe some link there too - like having a hard time dealing with the lack of sleep and energy it takes to raise a small child.

Anyway, hang in there and PM me if you need to!

Mitra
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Re: New and coming out of hiding

Postby leaflea on December 3rd, 2013, 1:50 pm

Hi WhatNow,

I can relate, a few years older than you but the succession of things and the terror of what looks like atrophy. My kids are older, but I had a super stressful summer and this started in late September. I am also out of hiding, made my first post today after lurking for about a month.

Will post after my EMG tomorrow
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: New and coming out of hiding

Postby 6t5frlane on December 18th, 2013, 6:18 pm

I would continue the supplements. I would also follow up on the Lyme thing. Remember the blood tests suck for it
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Re: New and coming out of hiding

Postby ShawnW on January 26th, 2014, 5:09 pm

I definitely jerk...sometimes before going to sleep. Sometimes on anxious days if someone or something touches me...sometimes for no good reason. I have done it for years.

As for your reflexes. 1+ through 3+ are considered normal. Brisk reflexes without pathological reflexes or clonus are not worrisome...certainly not on their own. On days where I'm really anxious my patellar reflexes can really pop. Then when I calm down...back to normal. No babinski, no clonus=don't lose sleep over it.

The rest of what you talked about sounds like straight BFS. You are way ahead of the game with normal neuro and EMG. My EMG is on Tuesday. Hope mine comes out as "pristine" as yours.

Take Care and enjoy your kids.
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Re: New and coming out of hiding

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