symptoms, any advice would be great!

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symptoms, any advice would be great!

Postby Tb12 on December 29th, 2013, 3:46 pm

Hey guys,
Hope everyone is well, always such a insightful and supportive forum. Well i have reached my twelve months of troubling symptoms and thought i would give a update as i am sure we know that just because time passes we so not stop worrying completely. quick back track run down

symptoms:
1. high quantity of twitches everywhere in my body, you name it, i have twitched (still current)
2. postural tremors felt and seen as well as tremors if holding weight etc on any limb, body part (still current)
3. myclonic sleep jerks and now some electric shock type jerks whilst awake that move my body and a limb (still current)
4. GERD, heartburn, scalloped tongue, slurring of some words my th's sometimes turn to f's, tongue biting on occasion whilst eating (still current)
5. extreme muscle stiffness throughout whole body, feels difficult to hold my posture most days (still current)
6. extreme muscle pain that is sporadic and all over body periodically like sharp pains or deep pain (still current)
7. tingles and ticklish itchiness that drives my crazy through out my whole body (still current)
8. a few cramps that kill or a feeling of a cramp like deep pain through out body parts (still current)
9. extreme clicking of joints with pain involved(still current)

medical history for these symptoms
1. 8 neuro visits:
2. clinical exams always fine and passed, no clinical weakness seen even tho i feel weak and am tremoring and less stable
2. 5 emgs in the one year, first emg was suggestive of mild chronic denervation, the other 4 were completely normal and clean
3. endocronologist, blood work and hormones all fine
4. mri of the brain was clear
5. spinal tap discovered cranial hypertension was raised.

note: Last neuro visit was 3 months ago and i got another all clear of anything sinister or nasty.

The things really worrying me are finger twitches that move my whole finger, they are very persistent and happen daily and a lot, does anyone have these that frequent?
the tremors are really bad and my whole body shakes especially my mid section which feels weaker and shakes like crazy just trying to sit up in bed unassisted, or my legs if i just hold them out right will shake and tremor violently and visibly anyone here get that? also the cramp like pains that are very painful and pain in general in muscles unexplained and the tightness/stiffness anyone get that? one last thing i have a lot of rib pain, they are sore just to tough, hurt when i cough or sneeze or breath in a lot coupled with extreme shoulder pain....could this be more than BFS? could it be fibromyalgia? i am male tho. Judging by my medical history can i rule out ALS? even tho i have never had my back, tongue or chest, stomach emg'd, only every limb? i am only 28 years old, any advice and support would be greatly appreciated.

I want to take this time to wish everyone a merry xmas!

Trent.
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Re: symptoms, any advice would be great!

Postby emmie.s on December 29th, 2013, 11:06 pm

Pretty much every symptom, from the sleep jerks to the twitching everywhere to the scalloped tongue and big twitches on your fingers is all common on this board and is typical for bfs.
Same goes with the cramps and almost cramps and the pain on various body parts. Did they check your ANA levels for anything autoimmune like sjogrens or arthritis? Fibro is maybe another possibility depending on your pain. Also, if the neuro thought nothing of your tremors, then it's likely benign tremors which is not uncommon among twitchers.
I'd say after a year of twitching, clean EMGs and clean neuros you should be well past the scared of als phase and into the next step of accepting and maybe even trying to alleviate your symptoms. Do you keep a journal of your symptoms and what sets them off the most? For many it's stress or illness, and for a lot of people on this board it's certain types off food, like gluten, caffeine, etc.
Good luck, and happy holidays.
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Re: symptoms, any advice would be great!

Postby leaflea on December 30th, 2013, 10:46 am

I'm no expert in fibro, but from what I observe it can happen to males and when it does it seems to have more exaggerated symptoms/be worse?
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: symptoms, any advice would be great!

Postby Tb12 on December 30th, 2013, 8:01 pm

Thanks for the replies guys. I think I will see a dr to follow up possible fibro. Does anyone here have a constant feeling of wobbly and unstable legs? Also the same feeling in shoulders? If I stand still my legs feel strong but I feel like I am going to topple over and my muscles clench to hold me up.. Trying to figure out of its a weakness or a balance issue.
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Re: symptoms, any advice would be great!

Postby emmie.s on December 30th, 2013, 8:44 pm

Weakness, namely clinical weakness, is not a feeling, but rather a state of being. Meaning, you would not be able to stand on your tip toes, open a door, etc...the odd, wobbly feeling is very common with bfs. It's called perceived weakness.
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Re: symptoms, any advice would be great!

Postby Gamindsoc1509 on December 30th, 2013, 8:48 pm

I'd be curious to know if your finger is actually twitching or tremoring?

My fingers tremor and in certain positions they will jump and hop around. There isn't an actual twitch happening in the muscle however.

In saying that, smaller body parts (fingers and toes) do commonly jump from the twitch and it's because the muscle digit is very small. Nothing abnormal at all.
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Re: symptoms, any advice would be great!

Postby veryworried123 on December 30th, 2013, 9:49 pm

Wow you've had a lot of emgs

Your fine and well past anything nasty

I agree get a ana test done
But I'm sure that will be fine

Thanks
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Re: symptoms, any advice would be great!

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