New.. Hello
 

Hi

I wrote a big post and for some reason it didn't post :-(((
Any ways I will rewrite so for now hello.
Just had skin biopsy two weeks ago and all other test in the world normal

So why am I

Burning, twitching, cramping, stabbing, pin pricks, fire, all and not top to bottom

Thanku

Tulips

Hello and welcome to NeuroTalk.

When you log in there is a little box called "remember me" next to where you type in your username. If you check that box,
you will not be "timed out" making long posts. If you do NOT check that box, then there is a time period for posting, and if you exceed it, you will be dropped.

Also new members, are screened by the Support team, as a safeguard from those people on the net who spam forums like ours. This screening period is short, but a slight delay may result until a moderator checks the post out.

Just continue to post what you need to, and we will take care of what we need to. (I do not moderate this forum, but I do the others) ;)

In response to your question .... Did you have B12 testing?
This link explains "normal" is not really normal when doctors use the outdated ranges that appear from labs.
http://neurotalk.psychcentral.com/thread85103.html

The same is true for Vit D. We have had some posters here when tested for Vit D were found to be extremely low. Fixing this may help also. Doctors do not treat low D properly yet or interpret ranges for it well, like happens with B12. Your target based on the new research and info should be between 50ng-80ng/ml.
This thread has medical videos and other useful information on D:
http://neurotalk.psychcentral.com/thread92116.html

These are the two of the most common problems. Others include dietary intolerance to gluten, or other food intolerances, hereditary PNs which require a DNA test, and some rare autoimmune situations that don't show up in typical testing. It is best to get your records and read them carefully to see what tests you really had and what were the results. Posting here can help determine if you have had all the testing needed.

Well just wanted to welcome you though sorry for your pain. This is a very educated and caring forum. I have learned a lot and made some close friends.

It is importtant that you have teat results in actual numbers and never take 'normal' or any other word as a result.
You can find the tests for PN at:
www.lizajane.org
as a downloadable file that you can input your own numbers on. It is the most comprehensive list of all tests for PN that I know of.

Hi

I have been suffering for 12 plus years
Muscle biopsy normal(mild denervation)several emg/ncv (normal, carpal tunnel) blood for Ace, pth, diabetes, thyroid, paraneoplastic panel, b12,spep serum and urine, stiff person syndrome, vgkc, normal

Vitamin d deficient and over years sed rate elevated( highest was 50) Ana was normal and so was ck and cpk.

Ct scans clean too. Of lung and stomach
I have had trace blood in urine for ten years. It discovered while facing bladder infections for a year. Uro did all kinds of test to find reason but nothing. Infections stopped but blood didn't.

Been to so many docs and even at utsouthwestern at Dallas but nothing.

I have from head to toe stabbing pain, sharp cutting zapps, pinching, pin promos tingle numbness. And patches of numb feeling. Goosebump like and left leg that won't stop vibrating and back an face.

My toes the pain feels like if u play in snow how excoriating pain it gets from cold. Throbbing. Tearing, water trickling down. At time water falling on feet feels like nails.

I also have severe cramping, spasms. Rapid spasms and severe twitching inevery inch.

Sharp twinges even all this is face scalp and throat.
My throat gets so tight like muscle bieng pulled from each end and it remains tight for days and makes swallowing difficult cause it's like trying to move thru a syiff muscle.

When bas in my arms just the swinging of arms when walking makes te rearing pain worse. Even any movent like bending it.

Does neuropathy get worse when moving.
My whole face, tongue and even my gums burn!
It migrates all day. Everyday is different

My last vitamin d level was 9. Taking 50,000 UNITA weekly

My symptoms got worse after flu hot in 2003. Before that I had all te stuff but after all hell broke loose. Felt like my legs were set in fire.

I also have trmors. Especially when I wake up or get startled I feel my whole body shaking and vision for a bit.
I always jerked while going to sleep but now it's worse. As soon as I close my eyes something will jerk.

So I know I have motor involvement too. Just don't know what is causing all this

I have a sister with ms. By myri and spinal taps are cleasn.
My mom complains of neuropathy like in hands but she is borderling diabetes.

I am so xonfised what to do next. Have had so many test and tons have been repeated.

No genetic Teating done yet and I just lost my insurance. Also heavy metal test normal.

The doctor says it's obviously ysymatic since it's all over.

Genetic, toxic, autoimmune, metabolic endocrologic ...what could it be.

It all started with sensory stuff when I was 1) and slowly progressed. I have severe cramping now and get rapin spasms and sustained spasms.

I have where my neck goes out for days and remains cramped.

I suffer from severe allergies all my life and grew up with sore throats and infections of it.
Developed eczema during pregnancy.

I never took any Medicines until 2006.
In 2006 stayed in hospital for a week after spinal tap headache. Finally tried lyricxa and zanaflex robaxin! Nothing worked

Now on baclofen and 2 mg Valium as needed but I don't take these daily. Dosent mean that my pain might not bee much then. I cry daily all day but at the same time I am afraid of these meds. I have neurontan sittig here That I haven't tried!

I had doc write me lidoderm patch but he said I can't put it all over so that's not gonna work!

I am so lost and confused I just want tonknow why.

Does this sound like sfn?

My celiac panel o blood was normal too.
I did a cleansing diet with a naturopath for 21 days and no hang and I quit that. He said to stay longer for it to work. He charged me 600$ for visit and supplements!!

I know I have to figure out and come to term with that treat the symptoms for now.

I even get stabs all over my scalp and eyes. My whole face twitches pulls and burns and all.

It's all over. I feel like a lot up Christmas tree that has flickering lights and those lights are the movent of pain.

Any recommendation on medicine.
I bought 600 mg alpha lipoic acid is that good?

Thankyou
Tulips

You need to find out your B12 numbers, ASAP. Low B12 leads to many many neuro symptoms in some people.

Spasms can be from withdrawal of the Valium... But it is long acting in most people. As it wears off in patients who use it every day or often, there are mini-withdrawals where the muscles and some nerves react.

Also spasms may respond to magnesium supplements.
I have a thread here:
http://neurotalk.psychcentral.com/thread1138.html

Starting at 1/2 the RDA using a good form may help.

The Vit D given by your doctor is not the best solution. Please read the link I gave you. If your doctor wants 50,000IU weekly, get OTC D3 (buy online). The RX D2 doesn't work well.

I would make sure you are getting enough zinc and Vit C daily.

Losing blood from the kidney is not normal and should be evaluated by a nephrologist.

Lidoderms only work when a specific target has been located.
Say a lumbar compression, or neck, or foot area. If used improperly they are useless.

There are other foods that can cause symptoms. An elimination diet would be a good idea, to screen one at a time for
Corn, soy, dairy, nightshade veggies (tomatoes peppers and potatoes), lily family (onion/garlic). Remove one family for 2-4 weeks, and then reintroduce it. You might find a serious culprit that way.

Avoid MSG in processed foods and restaurants. It can wreak havoc on the nerves.

Right now, you do not know 1) your serum numbers for B12, and whether the D is working or not (I suspect not).

Vaccines can cause all sorts of problems. Usually reactions to vaccines are treated with IVIG (which is expensive) because of the autoimmune nature of the reaction.

Figuring out things, requires homework. No way to get around that. This forum and the subforum attached to it has information you may find helpful. There are over 100 causes of PN... and you have to learn about each one critically to know how to approach it.

Alpha lipoic acid (or the newer r-lipoic) is discussed in the subforum above.

Sorry for writing so many times but I keep thinking of things that might help.

I have all the sfn symptoms and like sudden buzzzzz sensation here and there like face.
I have ha so many test with contrat like ivp and MRI I wonder of toxcixitty but when it all started I never had any teat before tht only took antibiotics for upper resp stuff.

I even have this burnig buzzing vibrating in my ear lobes!!
And private areas. And now getting severe twinges that are like pinch and twist. Even in my private area for urinating( so painfull)

I have questions about vitamins. Are regular ones okay that regular shoppes sell cause the naturopth doc told me those are not reliable and he gets it from good company.
So I bought his one is from Biotics research corporation and other is b12 from merit health care products.

I can walk and no strength loss in sook much pain

Is LDN good for idiopath neuropathy.
Just want to say I am from Pakistan if that helps to narrow something.

My Spep blood for immunoglbulin G, qn serum says 1617 high ( normal value 700-1600)
Doc said it's fine!!

In 2006 my b12 was 717
Homocystenine 6.9
Methylmalonic acid 169

In 6/2010 b12 444 with no other test done
My ha1c is 5.6

My celiac panel says
Deamidated gliadin abs, Iga 6.9

tTG iga. 1
Immunoglobulin A, qn, serum 365

I never have taken Valium before now in my life. And been suffering for over 12 yrs. Never took any antideppresants.
And only have taken 2mg Valium like three times so far to see if it helps. So I know it's not that cause I have been cramping for years.

So you had these symptoms while still in Pakistan?

Have you been screened for diseases that may occur there?

Your B12 is coming down.... and now is borderline.
What exactly does your B12 label say? I cannot find it on the net. Type and dose / tablet?

Do you have rashes? Are you taking high dose niacin in your vitamins from that naturopath? Niacin causes skin flushing and burning/prickling.

A good Centrum senior would have most RDA things in it. (vitamins and minerals).

Are you a vegan? Or do you eat meat?

Do you consume fatty fish like salmon regularly?

Are you exposed to pesticides? Solvents in hobbies, or furniture refinishing? Dry cleaned clothes often?

I have been in USA since 1992 and my symptoms started in 1996 when in high school with burnig years and elbow which lasted couple of months and disappeared. Never had it checked out. Then again it started in my nexk in 1998 suddenly and spread to arms and throat. Burning strange sensations I couldn't explain. I xouldnt touch metal cause it would make it worse and as years went on and two pregnancies later here I am with it. It spread all over fairly quickly and worsened after flu shot in 2003.

Vitamin says methylcoblamim 5000 mug (5mg)
Folic acid ( 400mcg)
By merit pharmaceutical

Other one is
B 6 (as pyridoxal-5-phosphate) 20 mg
Super dimutase ( from vegetable culture) 20 mcg
Catalase (from vegetable culture) 20 mcg
That's from biotics research corporation

Other is
Calcium(as calcium gluconate) 18 mg
Magnesium ( magnesium gluconate) 5mg
Potassium ( potassium chloride) 52 mg
3 times a day one pill

That's all he gave me.

Not exposed to anything other than house cleaners


Eat all kinds of meat except pork
Hardly eat fish

I think my h1ac is borderline at 5.6

I hardly eat fish. Not a vegan

Came to USA in 92 and this started in 96 when in high school. It was with burning on both whole outside of ears and then left elbow.
I am thinking vaccines or the fact I always had allergies or upper resp stuff and took antibiotics.

Never took any recreational drugs my whole life or smoked or drank alcohol.

If you do not consume essential fatty acids, your body cannot repair itself.

Here is my EFA thread:
http://neurotalk.psychcentral.com/thread6092.html

Flax oil, and fish oil (or the fish themselves) are necessary for normal skin/nerves. Too much Omega -6 oils like sunflower, safflower, peanut etc, and you become inflamed, and allergic.

The two types must be balanced for health.

Red ears often show up in children with food sensitivities.
If I were you I'd look to something you eat often and also crave.
That can be the culprit. Start a careful elimination of suspects.
This will take time. For example, I found potatoes a trigger for myself! I didn't suspect it for most of my life! I know your doctor thinks that gluten tests are negative, but if you read the gluten board here you'll find people who had negative testing and still improved by going gluten free. The tests do not target everyone consistently.

If you were on alot of antibiotics, one family, called the fluroquinolones is a known causer of PN. (Cipro, Levaquin, Avelox). There is no proven treatment this damage either. Check my thread in the subforum for comments on this drug induced nerve damage.

The B12 needs to be taken on an empty stomach. If you take it with food, it may not be absorbed properly. That dose used daily correctly should raise your B12 levels over 1000 within 6mos, or sooner.

The calcium/magnesium/potassium doses are minute and not likely to help with anything.

Oh so why would he give me such low dose of calcium/ magnesium.

Plus do I need to work with some kind of practioner to Do elimination diet.

I crave sweets to much and salt!!
Eat bad! I did the detox of eating only veggies and apples and berries. Mostly raw veggies and I had no difference so I know that's not enough time to see a difference.

Thankyou so much for all the info.
I am waitin for my skin biopsy result to come back.
Might be till November. He only took one spot is that normal?

Tulips

I have no idea.... probably to make $$ for himself???
RDA for magnesium is 350mg a day
RDA for potassium 4500mg a day
RDA for calcium for adults is 1200mg a day (maybe less if you use high dose Vit D3.

Basically it just cost you $$ and provided very little.

The B12 tablet you should only need one a day of that taken correctly on an empty stomach.

The other, I have no clue what it is for or if it is valid.
"doctors" who sell you stuff...you have to be careful...they are out to make money basically.

Thank you mrs D. I think I will go down to vitamin store and get better mg magnesium
And calcium.

My mothernlw wants me to take goji and acai Berry juice and I want to run it by you guys.

Is 600 mg alpha lipoic safe?

Thank you

I was foong thru my doc notes and he states idiopathic neuropathy, tremor disorder, and possible hyperexcitability nerve disorder.

Cause my crampsare and just as prevalent as neuropathy symptoms.

This sounds to me--
 

--given the systemic presentation, as if there may be a hereditary component, and if not, then some sort of toxic exposure or autoimmune process.

It sounds like you need a LOT more testing--do you have access to a large teaching hospital, or are you relatively close to a specialty center (such as Cornell Weill in NY, the University of California at San Francisco, the Jack Miller Center in Chicago, Massachusetts General in Boston, Washington University in St. Louis Missouri, or Johns Hopkins in Baltimore)? Could your doctor refer you to such a place? (It sounds as if your current doctor is limited in understanding of neurological disorders--just doing the SPEP without doing an immunofixation electrophoresis to determine type of immunglobulins, not just quantitiative levels, for instance . . .)

I certainly support trying to as much nutrionally as possible, but I suspect that you may have an active disease process that needs to be addressed as well, and I recommend looking at the Liza Jane spreadsheets for the purpose of suggesting avenues for testing and tracking results over time:

www.lizajane.org

Hi

I have been seen at the utsouthwestern by a neuromuscular doctor and he did emg/ncv and didnblood work for vitamin d and wilsons disease and has dismissed This as neuromuscular and said he has no clue!!

The spep was pretty detail with the urine too.I have the report and it has all that you are talking about.

I have had so many test and some special ones. I will look at that list but don't have insurance right now so will have to wait and see.

I am waiting for my skin biopsy results. I am seeing a different neuromuscular specialist and he is with Baylor. He is good and docent mind runnin whatever test.

Neuro muscular ??
Are you sure?
Why not a neurologistspecializing in neuropathy?
Or both !
Unless you get the right kind of doc,
you can run in circles forever.

I have read recently that the "new discipline" is incorporating peripheral nerve problems into the specialty "neuromuscular". This is happening in the teaching hospitals first.

Myasthenia Gravis is now being seen by neuromuscular doctors, too. It appears the Neurologists want only the CNS type disorders, the biggies.

Tulips has alot of muscular spasms... which suggest neuromuscular also.

That has been my experience at the Boston teaching hospitals. The physicians who note a "clinical interest" in peripheral neuropathy on their on-line profiles are those that specialize in neuromuscular disease.

Well that's the problem. In 2006 they said you need to be seen by neuromuscular cause o your twitching and cramps and spasms. So I did and if u see their notes they mention parathesia and mayalgias!!!

I really don't think they understand me or I don't explain well. I don't know
I tell them everything from sensory symptoms to cramps.

Doctor also thought Isaac syndrome but emg/ ncv and vgkc was normal. So this time I really forced this issue with stabbing and burning and he said sounds like sfn and let's do skin biopsy.

Been to 4 neurologist so far. This is the first guy at Baylor that says neuropathy.
He ran paraneoplastic panel and that was normal.

I don't know just feels like they don't listen. I have said so many time it was always sensory stuff then cramping and twitching happend.
I think along the line muncramping became so strong that that's what became the topic and confused doctors too.
Especially this flare cramping got web worse. Especially is ribs and back and stomach and can't sit
In a good position.
My spasms feel like pulling. I don't know if thats in neuropathy but I can feel a pulling sensation.

I think that's what the doctor one time said he is totally confused.. There are so Many symptoms

To me if a person has twitching sure they can have cramps or burning. It's all nerd related so why cant multiple thins happen.

Mrs D that's another thing in notes it says seems like hyperexitabilty syndrome of the nerves. Like neuromytonia or isaacs. The doctor at ut southeastern even said it could be benign cramp fasiculation syndrome!!

Which is garbage!! When they dont know what's going on.

I recently saw a brand new neuro and when she saw my records if seeing a especiList in teaching hospital she said oh if they can't figure it out then I can't either!
I was shocked!!

Well there are symptoms only I can feel like the stabbing and etc.. But if you were to put your hand on my calf you will feel the nonstop activity of muscle jumping and twitching and flickering. You can see it to. It's like worms under my skin. Xonstant movements like this is all over too face and all.

My stabs turn into feeling twinges of cramps and just like migrating stabs come and go so does this! I getthen under my arms too ( soo painful)

I want to ask if this is like sfn. My arms feels like they are tearing. And even movement makes the sensation worse. It's like extend tightness and burn and I can't touch one arm with other or it gets worse.
Every day is different. I even have th twitching in my stomach like baby kicking.
And can induce it by sneezing.

Sorry for writing so much. It's almost like therapy right now! I feeli like a ticking time bomb and in soo much pain.

Tulips........i can relate!
 

Tulips.........I can relate to so many of your symptoms, almost all of them actually, I have baby kicking in my abdomen, upon wakening in mornings, I have electrical worms in calf of leg and muscle twitching. Along with stabs and pricks all over face, scalp, every other part of body, every second. Sometimes burning, like someone is putting a hot spike in a body part. Water running down leg feeling.

I had 2 EMG's a year ago.......came out ok, very surprised.
I am now going for skin biopsy to confirm Small Fiber Neuropathy.

Dr say benign muscle faciculations are cause of my twitching, seems such a coincidence they would arrive along with all these sensations. Wondering if motor is involved but didn't show up last year on EMG......... would like another.

I do not have weakness or gait problems, do you?

Are you on meds? I am on 1200 mg. Gabapentin/60 mg. Cymbalta.

You used the word migrating and said yours gets worse with movement. Mine does at times, but will happen without movement also.

Look up Wartenbergs Migratory Sensory Neuropathy. It really sound like it may be us!

Yes, writing is therapy for me too!

Hi invisible

Sorry you suffer like this too.

I have it with and without movement too.
I take baclofen as needed and 2 mg Valium for breakthru. I have tried lyrics and no help.

My emg clear and ncv clear except carpel tunnel.
Have you liked up Isaac syndrome and had blood done for it. Blood test is called volted gated potassium channel. Or vgkc.
I tested negative but it's a rare thing they don't check for.

I don't want to take these mess so scared of them !!
Do you have tremors internal like u are shaking but I have external
Now too. Especially if I get startled I shake internally. Another this is I am getting more of jerks
(myoclonus) I alway use to as falling asleep. U know like u fell when u falling asleep. But now if I just close my eyes and in not so falling asleep yet and something will jerk a bit. But at times when awake and sitting my leg ir angle will jerk a bit. Nit hard a bit.

So I feel some if it is like movent disorder. But all I these things overlap each other and one can have tremors in so many things that makes it so hard to diagnose.

I hate the spasms in my throat and constant state of tightness that when there it clicks and makes sound when I swallow .

Tulips

[QUOTE=Tulips;704049]Hi invisible

Sorry you suffer like this too.

I have it with and without movement too.
I take baclofen as needed and 2 mg Valium for breakthru. I have tried lyrics and no help.

My emg clear and ncv clear except carpel tunnel.
Have you liked up Isaac syndrome and had blood done for it. Blood test is called volted gated potassium channel. Or vgkc.
I tested negative but it's a rare thing they don't check for.

I don't want to take these mess so scared of them !!
Do you have tremors internal like u are shaking but I have external
Now too. Especially if I get startled I shake internally. Another this is I am getting more of jerks
(myoclonus) I alway use to as falling asleep. U know like u fell when u falling asleep. But now if I just close my eyes and in not so falling asleep yet and something will jerk a bit. But at times when awake and sitting my leg ir angle will jerk a bit. Nit hard a bit.

So I feel some if it is like movent disorder. But all I these things overlap each other and one can have tremors in so many things that makes it so hard to diagnose.

I hate the spasms in my throat and constant state of tightness that when there it clicks and makes sound when I swallow .





No, I haven't been tested for Isaac Syn., I will request at next visit.
I did some reading on it, can't see any sensory symptoms involved though, only muscle.

You do seem to have many of the symptoms, but you tested neg, so can't be.

What about Myasthenia Gravis? Have you been checked for that?

Did you have a skin biopsy for small fiber neuropathy?

Internal tremor has been a secondary problem for me, no jerking though.........went to movement disorder specialist to check for Parkinson's......maybe another option for you to look into.

These are just suggestions, as I have been investigating all of this for a year and a half now, very frustrating to say the least.

Yes, you are right, many of these symptoms do overlap in various diseases.

Hi

I just had blood work for myasthenia ( normal)
Just had skin biopsy three weeks ago but results come in November.

I isaac can have sensory. If u read in there support site they talk about it.

I asked to be seen by movement specialist but my doc said no need!

Will call him again.

Face buzzing and twitching and sharb knife and jabs and crampsss oh my.

Same in scalp and eyes.gives migraine . I even get it inside throat.

Anyways what does it mean If it's intermittent.
That my throat tightness and all the nerve pain will come and go and when here it's hard to swallow.

Tulips

Invisible
 

Hi

I reAd up on Wartenbergs neuropathy. Sounds like me when I can make the neuropathy fire up ten times more in my arm when I bend my neck down and even in legs. Always thought that was wierd. It literally can make the tearing worse and if I bend at hips that would in legs.
That's what I said to neuro every movement makes it worse.

So ya who knows again it's a rare thing.

When is your biopsy.
Do u have it all day or off and on or it migrates one hot spot to other.I have it all over all day just changes in intensity. But some says it stops a some areas.