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

[borninquisitive]

This may not be your problem at all but I suggest you look into Magnesium and Potassium. Worth a shot.

In my early years, I had bad muscle spasms. Which later seemed to be resolved with higher Potassium intake. During a very stressful time (and taking a powerful anti-biotic), I developed twitches during the day and bad "jolts" when sleeping. I tried Magnesium supplementation and relaxation. This helped, considerably. Read up on these two minerals and be certain they don't interact with any current medication that you may be taking.

http://dietary-supplements.info.nih.gov/factsheets/magnesium.asp

[Hityty]

First... You're NOT alone, your description of symp's & pain sounds a lot like mine & several others here. To me it feels like electrical shocks,(that take my breath away) & sometimes it even feels like there's a constant electrical current running through me, not to mention the muscle pain & twitches. So, we understand how frustrating it is being told our tests come back "normal."
Try checking out Marshall Protocol at marshallprotocol.com, it's a treatment for autoimmune diseases, I started in August, it's long term, but it's a curative treatment not just a treatment of symptoms. Look up Hypervitaminosis-D, & read the symptoms of this, also look through the "Essential information about the MP" link on there homepage.
I would also recommend running a search on Lyme, Fibromyalgia, CFS & CFIDS, MS, Thyroid & liver, & lupus. Here's some links that helped me, but I believe you will find what you're looking for on the Marshall Protocol website, I did after searching for answers for 15 years.
http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html
http://www.aarda.org/women.html
http://www.Diagnose-Me.com
Keep in touch, K!

[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

[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.

[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

[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.

[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.

[makina]

A BIT MORE DETAILS.

I remember before 1998, when i was a teenager i use to wakee up in the middle of night with my ears on fire.  (dont remember one or both) and i would rub them for a while ten when it ok i go back to sleep.  another this is for a few months i had burning in left elbow.

the forward 1998, newly married and suddenly started feeling starnge sensation in neck.  odd sensatons that made it hard for me to look at people. ( not visualy just by sensation) still have this problem.  it was a wiered pain in neck.  then i started to have the same thing in my haands.  i had hard time touching metal.  it would send firy feeling up arms.  the thraot tightness started with lump to swallow.  went to ent who couldnt figure it out.  a month later it all goes away and i became pregnant.  in midd pregnancy legs tingle and feel numb.  dc says norml.  then tingling around lips. goes away.  3 days after labor boom all sysmptoms haywire.  severe left sided at first and then both. numbness, tingling type stuff.  lot of inflamation in muscle and joints.   muscle cramp in legs at this point.  see a neuro, mri and eeg normal.
sountil 2003 i see 2 differnt docs.  all work up normal. 2003 flu shot and all hell breaks loose.

always sick with upper respitory stuff.

before the flu shot stabbing pain had already stated but flu shot made it worse.

my hol face in vibrating.
i have also felt my eyeball shake. when close like vibrating

[makina]

one more thing

stabing pain in eye so bad knocked me from sleeping up.

u asked for copies of test.  how could i get them to you.

[Hityty]

The Marshall Protocol website does indeed mention Th1 inflammation because that is the sole source of a lot of illness': the inflammation, so yeah, they're going to "mention it!" I don't have the ability to debate how it works, the website, (that NO ONE IS MAKING MONEY OFF OF) explains it all well. It does of course sound odd & yes, some question the Vit D aspect, that's normal, especially when we're mislead into believing something is good for us our whole lives. Vit D/sun light is not good for people w/a Th1 inflammation disease, as their site explains. Mercury was viewed as something harmless & even beneficial; its good thing we all benefit from advancements made by science. Why is it so hard to believe that we still can be making more discoveries? I was just suggesting looking into the MP, if after researching it you do not find it an appropriate treatment for you, fine, but I don't discredit anyone else's advice, so I don't understand why anyone is discrediting mine. It IS a fairly new treatment; I bet a lot of people were probably skeptic to things like penicillin & Novocain when they were new, too.

I'm not looking for spam opportunities, there's no pyramid scheme involved, as I already said, it's a website, explaining a treatment used to help a lot of sick people. (BTW, I haven't had 1 spam email sent to me by way of them.) They ALWAYS insist on being under the care of a physician for whatever illness we may have. Doc

[makina]

one more thing i forgot

gagging is another sysmptom

read a dictation from second neurologist said possible dymlinating disease.

i have a 21 yr old sis recently diagnosed of ms.

[Hityty]

Makina, I read that millions of flu vaccines given last year & previous years were filled with mercury or thimersol, could you be experiencing mercury poisoning? It can really cause some major health problems. One website I saw this at was mercola.com, run a search of "mercury flu" in the Mercola search box. This of course, is JUST a suggestion.

[makina]

ya possibly

the docotrs dont say anything.  but the er doctor at that time said serum sickness from the flu shot.  whe i researched about it back then i remembr it said its short lived but three years later here i am.  the neuromuscular doc says whatever is going on it has not cause muscle weakness, atrophy or actual nerve damage.  (emg of legs normal)

i dont know what to do.  at my end of rope with this.  ok i know this is bad language.  i have to fight this

you know my first neurologist just termed as hypochondria and anxiety.  i read hi dictaion and it says she mentioned fera of death.  i mean so unfair becaus he asked me wierd questions back in 1999.  sure i am afraid of death who the hell is not.  so i feel like a new doc gonna read that and peg me like this from start.  

i wish docs could just be more better listners.  99 percent of symptoms they dont even listen just nod their heads.

[Hityty]

I know, its so frustrating, I

[young at heart]

You have had an extensive work -up.

A few things you have mentioned--the stabbing pain in your eye,have you had your eyes checked by an opthimologist?

The jerks that you speak of are extending from the c-spine.

The numbness and other disburbances you speak off are often sensory and unless the EMG/NCS tech is highly specialized they don't touch on this area.

Theres other test that one of these nuero's could of done.Visual evoked potentals,samotosensory evoked potental,lumbar puncture.MRI of the thoracic spine.

You definatly have many neurological symptoms happening.Don't let these DRs dismiss you,you know your body.

Keeping a journal of your daily symptoms will aide you in what brings them on,what diminishess them .

I was where you were at a few years back,I seen 3 neurologist,neuromuscular specialist,4 neurosurgeons(bad back) and a electro-muscular specialist.I was scared, symptoms were persistant and at times relentless.I suffered from pnemonia and bronchitis for 3 months last year and all these Drs said it was in my head.Finally my electro-muscular DR sent me for MRI's lumbar and thoracic.All those Drs were wrong,it wasn't in my head but in my spine.I was Diagnosed in June with progressive MS.My brain has been spared at this moment.My point is you know how you feel!!To many patients walk away when disgusted with a DR.Find a previous DR or a new one and be very up front with him.Be honest with him about the fear of dying.Hand him all your med records and ask him to figure it out.Tell him you don't want to be dismissed but treated as a patient and with the dignity you deserve.My neuro and I get along great now.
Keep us posted on how you are doing.By the way the majority of my symptoms appeared after a tetnus shot.

[crystaly]

Just thought I,d chip in I know how you feel. I,ve got similar symptoms including myoclonic jerks and can't anywhere other than unknown neurological dx and unknown neurological movement disorder What a joke eh! I wish you all the luck in the world getting a dx . xx Chris

[makina]

Hi

i have had mmri of entire spine.  last was in 2003.  it was normal but it said a minimalbulge at some place and said it should be doing anything.  it wasnt worded like that but i am just sumarrizing.

i do keep a journal sysmptoms.  but i can never figure out what makes it come on and go away.   i just right daily tab of all the syspmtoms.  

i do have a lot going on.  i was talking to my husband and saying maybe i am not explaining or using the right words.

i meanfrom head to toe. theres is so much vibratns in muscle too.
i mean should i give the doc play by play.  
for example.  sudden tightness in thraot followed by squeezing in eye followed by pins and needle in face along with twitching and rest of body ****.

i just give them basic list of sysmptoms and places they occur.

can the nuromuscular doc drop me as a patient if i bother them too much.  i have been calling ever week about sysmptoms.

[makina]

well i checked out the spin ebsite and this Arachnoiditis
sounds like whats going on with me.  but you know i lot of this sounds like it.

how did you come to thqt for me i am woundeing.

[makina]

yes sed rate elavated along with c-reative.  but not high numbers

all this stated when i movd to conneticut and my husband had cat too. so i have always woundrerd about lyme.  have been tested many times. negative.

what do u think about diet change  like juicing

[young at heart]

Ask the muscular specialist to do a samotosensory test.This can detect abnormal spots of the spine and back to the brain.
My neuromuscular DR ran this test after I had ask,okay I begged,this is how they detected the lesions in my spine.MRi's don't always detect the small things.

[makina]

what kind of test is it .  how is it done.  is it same thing as evkoe potential.  it was done  1999 normal.

one thing i have noticed past yrs my -spine mri normal and recent one mentioned some deformity typ stufff and said one causes spasms.

[young at heart]

Yes its an evoked potental.If you had this in 1999,you want to have it repeated.Technology has changed and equipment more efficient.What actually is wrong with the c-spine,this could be attributing to the spasms,nerves and pain

[DrConan]

Full body pain and your other symptoms do sound like magnesium depletion, but you will never be able to replenish the mag levels with oral supplementation alone. I have had full body pain and many other symptoms. nothing seemed to help, so, being a science geek, I developed a very effective therapy, a product called Magnion ( www.imagenlabs.net ), and also  Magic Oil. They are both transdermal forms of magnesium and The magnion has transdermal antioxidants and anti-inflammatories added as well. It took a few weeks of therapy, magnion in a bath and magic oil rubbed on the skin.....but my symptoms are nearly gone..migraines too. Too cheap and simple not to try. I used to hate baths...now, i take them instead of showers. also works good for exercise recovery