[Tulips]

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

[mrsD]

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This link explains "normal" is not really normal when doctors use the outdated ranges that appear from labs.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.

[daniella]

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.

[nide44]

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.

[Tulips]

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

[Tulips]

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