undiagnosed severe full body nerve pain, twitching and spasms.

[makina]

HI

I have been having this problem for 8 years, started in 1998.
getting worse in 2003 three days into flu shot.

Have had several mri of brain with and without contrast all normal. emgs over the years normal, spinal tap normal, several blood test normal (sed rate elavated over the yeras up to 30).

I see a neuromuscular doc now who did a muscle biopsy which is normal, test me for stiff man-syndrome (normal.) he has no idea.
took lyrica for a month and now zanaflex up to 20mg in a day. (no help yet.)

The rhumatologist said fibro and neuro disagrees.  he says the twitching and spasms and nerve pain can be due to signal in nerves not traveling properly.  why he dosent know.
i read on my brain mri single left frontal lobe white mater but doc said normal? why?

my sysptoms
twitching in whole body
muscle jumping like popcorn poppin all over
muscle spasms all over body( throat spasms, svere tightness in throat, stabbing sharp pain in thraot with it, literally feels like sking bieng pulled apart.)
nerve pain all over body (burning, tingling, pins and needles)
nerve pain(stabing, electriclike sudden jads that are horendous and take the life out of me, piercing shooting in nature like some thing lashing me from inside.  lasts seconds but it is in multiple places in my body at the same time.)
at times when stabbs hit i get a single twitch.
my qustion what could this be.  is it possible to have nerve pain of this nature in the entire body and all together.
with my research i cant find anyreason for such pain in entire body all together

[makina]

hi

yes i have had cervical mri. i do have copies of everything and i have read doctors dictations. its said severe carpal tunnel in arms. but this year was the first time emg ever done on arms. before this alwas in legs. in legs it has always been normal. the dictation by the neuro dosent sya much just excluding things like ms, als and stiff mans syndrome.

this is what it says for mri of cervical without contrast
mild disc desiccation at c3-4, c-5, c5-6
straigtening of the -spine with slight reversal of lordosis in the midportion.
no evidence of abnormal signal intensity within the vertebral bodies.

the mri of brain
nonspecific T2 and flair hyperintensity in the left frontal white mattter.

dictation of neuromuscular doc.
extraocular movements are intact. facial stregnth normal, speech clear. normal muscle bulk, tone and tregnth. sensory exam in symetrical to fine touch. reflex normal.

we completed muscle biopsy which demonstrated no diagnostic abnormalities. blood work for cpk, anti GAD antibodies and parvo B-19 were negative. extensive imaging studies of brain and spine and other rhumatalogic exam , thyroid, and blood all negative. unremarkable emg accept for carpel tunnel. chemistry level unremarkable except for mildy elevated globulin and protien. sed rate elavated in past.

so basically i have in all gone too 3 different neurologist and one neuromuscular doc. no one has a clue.

my sysptom for last few days are crazy. my toes and finger are on fire along with rest of body and sharp electric horendous jabs of pain.
i hate it when its in my throat. all i know flu shot made all this go to another level in 2003.
i am in a pretty bad shape. i might go to the er tonight. eventhough the never do ****.

my strenght is normal, walking rmal, but the nerve pain is really bad and just the zanafles is not working.

I DO HAVE SUDDEN JERK WHILE I AM SLEPING.. ESPECIALLY WHEN I AM DOZING OFF TO SLEEP. THE OTHER DAY IT LITERALLY PUT ME IN A SITTING POSITION. AS FAR AS WHEN I AM AWAKE, ITS NEVER THAT DRAMATIC. I MEAN I HAVE A LOT OF TWITCHING IN MUSCLES.

THERE ARE SO MANY SYSMPTOMS IN SO MANY PLACES. MY EAR LOBE VIBRATES. WIERED

ANYWAYS I DONT KNOW WHAT TO DO ANY MORE .

the doc said its normal.

[makina]

hi

yes i have had cervical mri.  i do have copies of everything and i have read doctors dictations.  its said severe carpal tunnel in arms.  but this year was the first time emg ever done on arms.  before this alwas in legs.  in legs it has always been normal.  the dictation by the neuro dosent sya much just excluding things like ms, als and stiff mans syndrome.  

this is what it says for mri of cervical without contrast
mild disc desiccation at c3-4, c-5, c5-6
straigtening of the -spine with slight reversal of lordosis in the midportion.
no evidence of abnormal signal intensity within the vertebral bodies.

the mri of brain
nonspecific T2 and flair hyperintensity in the left frontal white mattter.

dictation of neuromuscular doc.
extraocular movements are intact.  facial stregnth normal, speech clear. normal muscle bulk, tone and tregnth.  sensory exam in symetrical to fine touch. reflex normal.

we completed muscle biopsy which demonstrated no diagnostic abnormalities.  blood work for cpk, anti GAD antibodies and parvo B-19 were negative.  extensive imaging studies of brain and spine and other rhumatalogic exam , thyroid, and blood all negative.  unremarkable emg accept for carpel tunnel. chemistry level unremarkable except for mildy elevated globulin and protien.  sed rate elavated in past.

so basically i have in all gone too 3 different neurologist and one neuromuscular doc.  no one has a clue.

my sysptom for last few days are crazy.  my toes and finger are on fire along with rest of body and sharp electric horendous jabs of pain.
i  hate it when its in my throat. all i know flu shot made all this go to another level in 2003.
i am in a pretty bad shape.  i might go to the er tonight.  eventhough the never do ****.

my strenght is normal, walking rmal, but the nerve pain is really bad and just the zanafles is not working.

I DO HAVE SUDDEN JERK WHILE I AM SLEPING..  ESPECIALLY WHEN I AM DOZING OFF TO SLEEP.  THE OTHER DAY IT LITERALLY PUT ME IN A SITTING POSITION. AS FAR AS WHEN I AM AWAKE, ITS NEVER THAT DRAMATIC.  I MEAN I HAVE A LOT OF TWITCHING IN MUSCLES.

THERE ARE SO MANY SYSMPTOMS IN SO MANY PLACES.  MY EAR LOBE VIBRATES.  WIERED

ANYWAYS I DONT KNOW WHAT TO DO ANY MORE .

the doc said its normal.

[Demiguise]

I agree w/ the Neuro. I'll give your condition more thought
& get back when I have more time. 1st, have you had a Cervical Spine MRI/do you or will you be able to get copies of all tests
run, (scans,emg,bloodwk,biopsy)? Has any one of these Dr's
mentioned 'Myoclonic jerks' or 'Palatal Myoclonus'? You've
definitly described symtoms of myoclonus that can involve muscle
& nerve responses. If you're having all these problems, someone
isn't telling you a theory/knowledeable/witholding real results.
An emg always picks up nerve conduction from spine & will show
a faulty 'wave' answer, especially if you had jerks during test.
Did you mean 'signal' or single in the left lobe? Big difference
in what problem is. One is feedback/other is visible find. You
need to start a hm-health-file by contacting places to sign a
release & mailing or do pick-up. In person works fast w/ a
nice smile. Do spasms/jerks lift arms/legs during sleep & wake
you? Are you able to stand w/ feet together & arms straight out
for a time w/o problems? At quick guess, yes, there is a mis-
firing of neurons that may be triggered by C1-C2 in spine near
skull base & then path break-dwn. You have a very complexed
more than 1 problem. A Neuromuscular MD would be the correct
one to dx. Give more info re: conditions/copies. This is beyond
fibro. Maybe do a print of this & then address questions? I'm
always skeptic when certain cures surface so I try to read. The
Marshll Protocal may help some. I know that it isn't my idea to
treat because it mentions Th1 alot like it's super special &
all it really means is inflammation. You're supposed to suppress
vit-D which is a necessary component to us. Bones/teeth rely
on D. Sunlight gives D & w/o, lowers our immune system.
Yes, he is making money but not direct. Visit sight and you
will have '5 cookies' attached to disk & the spam begins!
These cookies are glued to hardrive. I can't get rid of them so
I've been spammed w/ meds/places for fibro/cfs/etc. That's the
income source. Many spams for nutrients touted. 1 must be key-
stroke tracker. Ea. morning, it gets through from words/names
I searched the day before at other sites. Just a warning.

[Hityty]

I totally understand the reluctance, especially if you've "tried it all" too. I'm sure you understand the feeling of being sick enough to try anything! I too am a skeptic (now) when it comes to "cure alls" Trust me! The Marshall Protocol (MP) isn't one of those. The treatment, (px

[makina]

its me again.
i have been trying to post in neurology but every time it says its full

is there a specific time for it.

[borninquisitive]

If this program works for you: perfect. As for me, I am reluctant to bank on any site that offers "cure alls"...and of course, with their product.

If looking into a "special" product provided by a "special" marketer, I would want to know exactly what it is I'm ingesting (if that's what they offer.)

As an offside, I have seen products for colon cleansing, pictures of the results thereafter.
I balked at it. Why, because after I had taken a (too) high dose of Metamucil (cheap, OTC)...I had seen similar results. Picture not include, no thank you. lol

All I can say is, research-research!

However said, glad that something works for you.

~Kate